February

Another five weeks has passed, and it has been another month that makes us feel extremely confident in our decision to make the move to Colorado for this treatment for Maddie. Since our last update, we have changed up meds and dosing a bit and we are still seeing similar seizure improvement to what I reported in our last update. The reason we are so pleased is that since starting Charlotte’s Web, we have weaned her Clobazam, an extremely strong and addictive seizure medication, by 20%. There were some upticks in seizure activity with each drop,  but after a break from the wean, she is back to a fairly consistent daily seizure count which is at least 50% better than when we got here. We had tried and failed at weaning Clobazam for the last two and a half years, each time with seizures becoming very dangerous after just a tiny drop. So this is progress I am extremely pleased with. We hope to wean this pharmaceutical completely, but that will take us awhile. We are trying not to make her tolerate med changes constantly, so it will be slow.

Her development is continuing too. She is so much more alert and is just comprehending more.  It is amazing to see. It has been extremely slow and frustrating trying to set up all of her services/therapies here in CO. But this week, she will officially begin both ABA therapy and school (still homebound). I am confident once she is back in a routine of therapy and school that we will begin to see even more amazing progress.

I am still working HARD on trying to get this amazing medicine legalized in NC so that all of the kids in NC have access to it without having to uproot their whole families to give it a shot. If you haven’t seen, we’ve been on the news quite a bit. Here are the big clips:

WRAL  – Raleigh 

WBTV  – Charlotte 

Media attention helps, but we still need the legislators to really begin to listen and take action. I think exciting developments are coming, and I will definitely share them with you here when it is certain. I’ll be asking y’all to write letters asking for your local legislators to support us and our bill when that time comes. I am very hopeful that this issue will be addressed in the upcoming legislative short session in NC.

In other news, Brandon was out for a visit last weekend and we actually got to have a ski vacation. It was a bit different than in the old days when we used to come to Colorado and ski, but he got in a full day of snowboarding at Vail and I skied for the first time in 15 years at Beaver Creek. It was so much fun. We hope to do it again soon, and this time we’ll have a Maddie-sitter (my mom) along so that we can actually spend the day on the mountain together. We are super thankful to my aunt Linda and uncle Mac for opening up their home to us and for a fun visit with them and their boys. As much as I’d like to legally be able to go home, this state is magical and I see why so many people love calling it home.

a little of everything

First and foremost: thank you! I was totally overwhelmed by the response to my last blog and I apologize for not having gotten back to everyone! I realized I should have had ALL my ducks in a row with what I needed before I put all that out there. I have been hard at work ever since trying to figure out what I need and how to best go about all of this.

On that note, along with other epilepsy parents, we’ve created a group called Hope for Children with Epilepsy in North Carolina.photo

You can follow what we are doing on Facebook at https://www.facebook.com/Hope4KidsNC

We are following the lead of a group in Utah who is pushing for the same thing, to legalize the import of high CBD/low THC Cannabis oil. One thing that you can do to help us accomplish our goal is to write to your legislators. Email is ok, but actual letters sent via snail mail are what they pay most attention to. Its especially wonderful if you actually sign it by hand and use your own words rather than any template I create for you.

To find your NC legislators, click here and enter your address. It would be great if you sent letters to both your NC Senator and Representative. Thanks so much in advance!

The points that would be good to include are:

1)  that you support us, either Maddie Gorman and her family, or Hope 4 Children with Epilepsy, in our mission to bring new treatment options to children in NC with severe epilepsy

2) that you support the use of High CBD/Low THC Cannabis oil for treating severe epilepsy that doesn’t respond to conventional treatment

3) you could state how our story, or the story of anyone with severe epilepsy, has impacted you

4) let them know that you want them to contact me or Hope 4 Children with Epilepsy to discuss ways to make access to this lifesaving medicine legal for suffering children in NC. They can contact us at hope4childrenwithepilepsync@gmail.com, https://www.facebook.com/Hope4KidsNC or you can share my blog address with them

5) let them know that you will follow up with an email or phone call to their office to discuss the subject

I’m still trying to figure out what all else we’ll need to really get the ball rolling here. If you happen to know any lobbyists or aspiring lobbyists in NC that want to work for free to try to accomplish something amazing, please let me know or pass them my info! Part of the reason that I published that last blog when I did (before I was 100% organized) was that I had filmed a TV interview that was supposed to have aired that night. I wanted to have something up on the blog which explained my position on the off chance that the news piece didn’t fully represent my views. The piece was delayed and is now supposed to be broadcast on November 26th during the 11pm newscast on the CBS station in Greensboro NC. I’ll update y’all if it changes again and I’ll post the link to it once its available online.

 

In Maddie news, there has been a lot going on here as well. I am pleased to say that while she is still having drop seizures, they haven’t increased dramatically. That was my initial fear…..that once they came back, that they’d quickly get back to previous levels. For now they seem to be holding steady. I am truly devastated that they are back. But having seen them so much worse before surgery, I am still grateful to the relative safety that surgery has provided her. And for all of the amazing things she has been doing since that scary day in July.

 

Aside from the re-emergence of her drop seizures, there is another issue that has created a lot of difficulty in our life right now. I mentioned before that she had lost weight and that feeding wasn’t going well. Two weeks ago, we finally got in to see the Feeding Team at UNC. They had lots of advice and tips on ways to get her to eat, but after evaluating her, they felt that for the time being, it was important that most of her meals come from pureed foods. They felt she wasn’t chewing enough and that she was pretty much swallowing food whole. The good news is that she is still swallowing well, but we don’t want her to think its ok just to swallow food without chewing. So we have been pureeing foods ever since. This is a LOT of work. And it makes each meal extremely slow, especially since she is fighting eating at times still. So it takes a lot of preparation for me to be ready with nutritious, but fattening pureed meals to feed her 4 times a day. Especially since she is still gluten and dairy free and we try to eat all organic. So I spend lots of time in the kitchen fixing really strange stuff.

 

The Feeding Team also suggested changing her reflux med. It seems unusual that she would have had changes to her reflux (yes, our precious kiddo has been on high doses of reflux meds since she was two due to all of her chemo and then seizure medications) due to brain surgery. But is IS possible that she is so much more aware since surgery that she notices the pain of the reflux more since surgery. And that the pain might be why she decided to stop wanting to eat. The stopping eating could have then led to weakness chewing which may be why she stopped wanting to do that also. She saw a dentist last week and she is also getting in her 6 year molars right now and that can be very painful, but they didn’t think that would be reason enough to stop chewing entirely. So we started on the new reflux med. Two weeks into it, I can safely say that her eating has been consistently getting worse. She is now waking up many times a night and having trouble going back to sleep. That is a sign of reflux in a child that can’t describe the pain. So just today we changed back to her old medicine to see if we can get back to where she was sleeping through the night. She is eating the purees very well, and is much happier not being asked to chew as much. But part of this process is to teach her to chew again, so that eventually we can get her back eating normal foods. Her weight is just holding steady, but its better than losing.

 
We also saw the neurosurgeon and plastic surgeon at Duke to follow up on the leakage of cerebral spinal fluid from about a month ago. The neurosurgeon seemed to think it was a fluke and that it is unlikely to happen again. She will have a repeat Brain CT scan on Dec 18th to verify that there are no active leaks or fluid build up. Her incision had closed back up by the time we followed up with them and they both felt it looked good and closed this time and that there were no signs of infection. So again, we were told to just watch it, so that is what we are doing!
As always, we are so thankful for all of you wonderful people who follow Maddie’s story. Please continue to keep her in your prayers that her seizures do not increase and that we have NO more surgical complications.
Wishing you all a wonderful Thanksgiving holiday, hopefully surrounded by family or friends!
Love to everyone,
Liz, Brandon, and Maddie

Epilepsy Awareness

We’ve got lots going on, but I’d like to take a break from my normal updates to address something bigger. November is Epilepsy awareness month. It is also Maddie’s birth month. It is usually a month that brings out lots of emotions and reflection in me because it’s hard to get excited about your child’s birthday each year when your child isn’t progressing typically. Each birthday often just highlights the massive gap between where my child is and where she “should” be. Oct 29th was the anniversary of her leukemia diagnosis and so it’s always a bit tough this time of year for that reason as well.

This year as my contribution to epilepsy awareness, I’d like to take you readers through a synopsis of what epilepsy has meant for Maddie and our family. When she was diagnosed officially in Feb of 2009, we thought her seizures were just a temporary side effect of her chemotherapy and that we’d be able to get them controlled with medication of eliminating chemo. How wrong we were.

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Playing just after she turned two, a few days before the seizures began

She had been on her first anti-epileptic drug (AED), Keppra, since we first started seeing seizure-like behaviors. It did nothing but disrupt her sleep and make her behavior terrible. The seizures only got worse. After the official Infantile Spasms diagnosis, her first treatment was high dose prednisone, a steroid. This helped to reduce the seizures but stopped her from sleeping entirely. It also made her scream or cry pretty much the entire time she was awake. I would put her in the car and drive her around the 485 beltway in Charlotte during the wee hours of the morning in an attempt to calm her. That was the only thing that kept her from screaming. Well, that and breastfeeding. I’d guess that she was feeding 8 hours per day at least. And in between would eat an entire bag of Five Guys French fries by herself. She gained almost three pounds in one month’s time. It reduced her seizures a little, but because they were not gone completely and the known side effect of psychosis was becoming problematic, we began a long slow wean, during which we started her next AED – Vigabatrin. We actually saw an exciting 72 hours without seizures right as we started this drug and that led us to raise her Prednisone again in hopes that the combo would stop the seizures for good.

Instead, Maddie ended up in the PICU with life threatening sepsis. One side effect of steroids is that they mask the signs of infection. So by the time she popped a fever, the infection was rampant in her blood. We certainly knew steroids were risky in a child being treated for leukemia because she was already immuno-compromised. But with the type of catastrophic epilepsy she has, they felt it was important to treat it aggressively as soon as she was diagnosed.

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In the PICU when we finally got her off the ventilator and breathing on her own

Maddie almost died that day. And it took her a long time to get back the personality and spunk she had before that PICU stay. When she was healed, we finished the wean of steroids. Vigabatrin alone did nothing for her seizures. She stopped sleeping well during steroids, and it only got worse with the Vigabatrin. About that time, we began to see the emergence of a new type of seizure in her. This meant that despite our efforts, her epilepsy was actually changing for the worse.

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Precious as always, but sporting a little steroid weight

The next two drugs we tried were Clonazepam and Topamax. Clonazepam slows everything down, most importantly the brain. It did reduce seizures, but only when we had it at such high levels that she basically slept all day. So we pulled back to a low dose on it and moved onto the next. Topamax made her lose her appetite completely. I guess we were lucky she had some weight to lose from the steroid trial. It did not improve seizure control.

After failing those drugs, it was decided that she should re-try high dose steroids, but this time we would try ACTH, an injected steroid. So for 7 weeks, I shoved a syringe into her little thigh muscles myself to deliver this powerful treatment for her epilepsy. It reduced seizures enough that we escalated to the VERY max dose, but even then, we never got anything really resembling seizure control. It caused her to gain five pounds, not ever sleep more than three hours at a time, lose the ability to walk because of muscle atrophy combined with the weight gain and have extreme behavioral and emotional issues.  

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This is what high dose steroids do to our girl

After failing this drug, we flew to Detroit for the first time to consult the Infantile Spasms guru, Dr Harry Chugani. Maddie was found not to be a candidate for any type of epilepsy surgery after two PET scans. So we returned home with plans to try one more drug and then a less conventional treatment.

The next drug she tried, Zonegran, actually helped reduce the amount of seizures in each cluster. Zonegran  is one of the drugs we look back on as having been good for her – but it affected her cognitively, she seemed to have trouble remembering and using words, she had night terrors and the appetite issues persisted. We hit her max dose on it and were nowhere near having good control of her seizures and so we moved onto her next treatment, the Ketogenic diet.

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On a quick trip to Myrtle Beach for the USMC Ball before Brandon left for Afghanistan, she is playful and fun despite seizures and side effects

I had really high hopes for this treatment. It is thought of as one of the more natural ways to treat epilepsy, and by the time we got to it, I was feeling extremely frustrated with the lack of results from AEDs and all of the side effects she had to endure during each med’s titration and wean. At this time, she was still on Keppra, Clonazepam and Zonegran. That’s the trouble with epilepsy and AEDs. You often think you are having some seizure control and are afraid to make changes. Every wean seems to make things worse than before you introduced the drug, so at a certain point, you just keep giving them to your child (following your Neurologist’s advice) because it seems more dangerous to remove them.

Upon starting the diet, we had a few days of increased clarity and energy. But that was the end of her good results. Despite tweaking it and following an extremely strict regimen for 6 months, we never again saw anything good from the diet. She actually lost many of her skills while on the diet. As it was happening, we were constantly reassured that she was just lacking energy and that when we tweaked things to get her energy levels back, she would be the Maddie we knew and loved. That was never the case. When we finally called it quits, she was functioning at below a 9 month level in most cognitive and motor skills. I could leave her on a bed and she did not have the skills or motivation to sit up or roll to get off. She was three.

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Her third birthday “Keto cake”

While she was on the diet, we weaned her Zonegran. It increases the risk for kidney stones while on the diet and there is some evidence that the diet works better without many AEDs. Unfortunately, that only led to more seizures. So when she came off the diet, she was still on Keppra and Clonazepam. The next drug we tried was Lamictal. It comes with a risk of Stevens Johnson syndrome, so we titrated up extremely slowly to be sure she did not get the rash that indicates this dangerous condition. When we got to the target dose of it, seizures had only worsened, so we immediately began weaning it. At some point around this time, we weaned off of Clonazepam and onto Clobazam, a newer benzodiapine which has less sedative effects and supposedly patients do not so quickly need dose increases because of their tendency to cause physical addiction.

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I can walk again!

If you’ve stuck with me this far, thank you! I frankly hate reliving this….but I am putting all of this out there for a reason….

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One of her many EEGs to monitor seizure activity. She is not a fan

The next drug we tried was Banzel. Maddie was extremely blessed to experience 2 months without seizures. It was an amazing time. I remember running my first half marathon during this time and praying and reflecting back on the two years of seizures and thanking God for finally giving my child a chance at a normal life again. That was really the only time during her battle with epilepsy where it really seemed like we might actually be able to beat it.

So while Banzel gave us an incredible two months, it was not without struggles. Every time I increased the dose, she would completely quit talking and walking for a few days. It was obviously very scary to watch, but with each increase, I saw fewer and fewer seizures. It felt like something good might be happening. So we stayed the course. And eventually the result was good.

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Fun exploring at the beach during a time where she wasn’t falling constantly!

But that is one of the hardest things about epilepsy drugs. We, as parents, come to accept that there WILL be some undesirable side effects of every drug we try. We just hope the results outweigh the negatives. And for Banzel, they did. She is actually still on Banzel to this day (three years later) because we are afraid things could be worse once we remove it. But the two seizure free months back in late 2010 were the only good times we got out of it.

When the seizures returned, they came back worse. We quickly escalated doses of Clobazam and Banzel in an attempt to reassert control. We spent close to a year tweaking things trying to get it back. But we never got there.

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This EEG was right after the seizures returned when she was only falling rarely

Her sleep difficulties had led us (during this time) to try prescription sleep meds too, Tizanidine and Chloral Hydrate. Her doctor felt that if we could get control of her sleep problems, maybe we could reduce the seizures, since she was prone to them when tired. Both of these drugs just came with side effects, and neither fixed the underlying sleep issues. She actually experienced severe withdrawal symptoms while weaning off chloral. Eventually, we weaned Keppra and after 2+ years of awful sleep abnormalities, and we finally got decent sleep for a little while. We never really suspected it as the cause, but clearly it had been contributing to her inability to maintain a normal sleep schedule. I also then put my foot down that she would never again be on more than three AEDS at a time. I realize that sounds silly. Now, I think I should have said no more than two…..but at the time we still felt she NEEDED Banzel and Clobazam and we were afraid to see what would happen if we took them away.

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Another trip to Myrtle Beach for the Marine Corps Ball, just before another deployment

The next med we tried was Vimpat. By this time I had grown weary of the constant titrations and weans and how it wreaked havoc on every aspect of her life. We went extremely slow. This drug did not improve her seizures at all, but during this wean, a new, much scarier seizure type emerged.

Her next treatment started once we had moved to Raleigh and when we were near Duke and UNC and could get to a good ER more quickly. Despite having sworn never to use them again, we decided to try high dose steroids once more. So this time, we agreed to have high dose “pulses” of steroids, for three days per month. We started the first course in the hospital so that she could be monitored closely. We didn’t see major improvements, but were encouraged to give it more than once to work. After the second round, we called it quits when there was no measurable improvement.

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EEG monitoring at Duke while starting high dose steroid pulse therapy

By this time, we have run out of “good” drugs to try. There are a few that work well for other epilepsies, but not hers, that we can still try. There are a few others we haven’t tried that are contraindicated in her because of a genetic mutation she has and another because of her history of leukemia. So we decided to re-try a drug that had worked reasonably well for her in the past, Zonegran. After her second dose, Maddie went into her first episode of Non-Convulsive Status Epilepticus, essentially a seizure that doesn’t end. Luckily, Diastat, a benzodiazapine that I have kept on hand for years to use as a seizure rescue drug, stopped the NCSE without us having to go to the ER. That was the end of our second trial of Zonegran.

That is the point when we really began seriously considering surgical options, either the Vagus Nerve Stimulator implant or the Corpus Callosotomy surgery. We flew to Detroit for a second round of testing to make sure she was still not a candidate for any of the better outcome resection surgeries. She was not. After being sedated for the PET scan there, Maddie had her second episode of NCSE. At that point, the thought of trying any new pharmaceutical treatment was extremely scary, given that anything new introduced into her system seems to start episodes of NCSE.

We made the extremely scary decision for Maddie to have the Corpus Callosotomy surgery. As most you know, she had this surgery on July 8th. Her results were outstanding at first and she made immediate progress in many skills for the first time since she was two. It was amazing. But seizures have been gradually creeping back in, and just last week she began having a mild version of her drop seizures again. She is falling from them now, but I can usually catch her, as they are a little slower than they were pre-surgery. She hasn’t really started losing skills yet, but she seems frustrated a lot (possibly because she knows a seizure is coming).  So it is time for us to make a decision about her next treatment.

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Asleep in the PICU at Duke post CC surgery

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Her incision runs almost ear to ear, this pic is taken before all of the complications started with the wound draining

It will be an extract from the cannabis plant. The reason for dragging y’all through that whole history of pharmaceuticals is so you can see that we have not arrived at this decision lightly. She has failed almost all of the conventional treatments available to us and so we have decided to try something else. As you may know, medical cannabis is not legal in the state of North Carolina. I plan to work as hard as possible to convince legislators here that children like Maddie should have access to what has been life-saving medicine for so many other children with intractable epilepsy. I desperately want to be able to stay in our home, with my husband (and Maddie’s dad), near my family, where we have a great routine and a great support system. But we are not willing to wait so long that we allow for her seizures to get back to where they were pre-surgery. It is just too dangerous. So if I am unsuccessful in getting the law changed to allow Charlotte’s Web extract to be imported, Maddie and I will leave Brandon here and move to Colorado where she will have access to this medicine, which has been so successful for many patients like her.

Intractable epilepsy has shattered us in many ways. At this point, with Maddie about to turn seven and functioning under a two year old level, it is virtually impossible that she will ever catch up. But we cannot continue to play the same game, trying drugs that only slow her down even more cognitively. One of the most exciting things being reported by parents of kids who are just starting on Charlotte’s Web is that many seem to be more awake, alert, and interactive no matter the effect it has on their seizures. I am not Pollyanna-ish, I don’t assume this is a miracle drug for every child with severe epilepsy. But the fact that so many children who have failed most of the conventional AEDs are having such success with it makes it something very different than our other options. There is NO single epilepsy treatment that has the success rate that CW is having for kids who have failed the number of meds our kids have on average.

I do understand completely that not everyone will understand this, without the benefit of perspective we have gained due to Maddie’s epilepsy. I hope that you will support us anyway and support my fight to get the import of this extract legalized here. I will not be fighting to legalize medical cannabis as a whole, as that is a much bigger issue, one which cannot really be addressed in NC for awhile because legislation was just rejected unfavorably in April. What I am seeking is for an extract of the plant, which has less THC than the legal level in hemp products (which are legal to import), to be legal for us to import from Colorado (where it is legal to grow and be used medically). Because of the extremely low level of THC in it, it does not produce the “high” that is associated with marijuana use. It is instead high in Cannabidiol, or CBD, which has been shown to have neuroprotectant and possibly even neuroregenerative properties. This high CBD extract has potential to improve quality of life in patients with neurological problems other than epilepsy as well. But it is hard for much research to get done because of all the legal issues surrounding its growth, testing, shipping, financing etc. There is finally a drug being tested in clinical trials that is plant derived and is high in CBD. Unfortunately, we live nowhere near the trial hospitals and Maddie doesn’t meet trial criteria, as I understand them. I am extremely pleased that there is a drug in the pipeline, but we don’t have the 3-5 years it will take to get it FDA approved to waste.

To read more about Charlotte’s Web, read this. If you have time, watch the CNN Special report done by Dr Sanjay Gupta, entitled “Weed”. It is available here. I could cite loads more articles and new research being reported. If you are interested in helping me make this a reality for kids like Maddie in NC, please post your email in comments (it won’t show up unless I approve it) and I’ll email you back to talk about how you can help. You can also email me that way if you just want more information. As an extremely over-protective mom, a Republican and a proud Marine Corps wife, this is not a battle I ever envisioned myself getting involved in. But I would do anything for my child.

At home, recovering from CC surgery

At home, recovering from CC surgery

Love to everyone,

Liz, Brandon, and Maddie

Two weeks until the Marine Corps Marathon!

It’s getting pretty close to time for my race. I ran 22 miles last Sunday, my last “long” run. I ran 12 miles today and I’ll run a quick 10 miles next weekend…..then the Marathon. I feel ready, though I honestly can’t believe I’m saying that. A few months ago, I constantly told myself and others that I had no interest in running a marathon. That half marathons were plenty. That I didn’t NEED to run a marathon. So what changed?

Nothing really. I still don’t really WANT to run it. But I wanted to do something outside my comfort zone and dedicate it to my precious Maddie. I wanted to raise funds and awareness for epilepsy.

And while I’ve done a pretty decent job of training for the actual running of the marathon, I’ve done a pretty terrible job of fundraising and raising awareness. I’ve done very little to publicize what I’m doing and so it’s all on me. I haven’t really asked for help either, though I recognized awhile back I needed it. Thank goodness for my amazing friends in my running group from Camp Lejeune, the Stroller Warriors, or I’d really have accomplished very little toward my goals.

I guess what I’m trying to say here is that my lack of updates does not reflect how passionately I feel about this cause. If I could invite everyone I know into my home for an hour, you would see our struggles. You would see how not”ok” Maddie is……but that’s not how I like to represent us in our blog posts or how I want us to sound. But the truth is that everything is a massive struggle for this precious little girl and this move has really sent everything into a tailspin. So my lack of communication does not mean we are just getting along like a normal family, but rather that life is so complicated at this time that I just don’t have the few minutes a week it would take to try to put our current situation into words……

In retrospect, the decision to run a marathon and fundraise while doing so just a few months after relocating was not a great decision. I guess it has been a nice distraction, and so hopefully at least my results on race day show my dedication to this cause.

But the reality is I would not have undertaken something this big during our move if it hadn’t meant EVERYTHING to me. Which it does. And I’ve done a terrible job of communicating that.

There is still time to donate. I greatly appreciate all of you who have already donated and I’m sorry I haven’t had the time to thank everyone personally.

Her Donation Site

Maddie’s battle with epilepsy will be lifelong. At this point we can no longer hope that her seizures simply go away. Please help us to fund research that will make her life more enjoyable. Thanks in advance!

And this time I really will update y’all on everything really soon……there is a lot to talk about!

Love to everyone!

Liz, Brandon and Maddie

Maddie’s Marathon

When we titled this blog years ago, I don’t think either Brandon or I had a clue what a “marathon” Maddie’s issues would turn out to be. We had thought of her fight against leukemia as a marathon in that the treatment is so long. We certainly didn’t expect the epilepsy diagnosis, and we had no idea that if Maddie won her battle against cancer that we’d be stuck fighting other different, and often more debilitating health issues for the rest of her life.

But it is what it is. And we battle on. Things haven’t changed much, if at all. We are still trialing meds, and have very few options left. She is still happy and precious and hands down the most amazing child I could ever have imagined having. But it still breaks my heart everyday to watch the seizures and know that they are robbing her of a normal life. I’ll give a more detailed update on what is going on in our lives in a later update, but I needed to get this out there because I am planning something important and I need to stop putting it off.

Many of you who follow this blog were part of our fundraising efforts for the CureSearch MileStones walk in Charlotte in 2008. That was right before she turned two and started having seizures, and sadly, that was the last time we did any fundraising. I am ready to change that and I decided that since I will run my first full 26.2 mile marathon this year, that I want to raise money in honor of her to give more meaning to my training and my race. I always think of her as my motivation during a race, but this time I’d like to make it more special and feel like I am really doing something to support the causes that mean the most to me.

Now that epilepsy is her main battle, that holds the place closest to my heart because it gets so little awareness, at least as far as how catastrophic it can be. Those of you who’ve followed us for a long time may remember my prayer that what we were seeing was in fact seizures, because I thought that meant it was something treatable. Not something that would steal her life from her and leave us with seizures daily over three years from when they first reared their ugly head. I still want to raise money for cancer research though, because in our case, we know that Maddie would likely never have developed seizures if it weren’t for the cancer, and the chemotherapy treatments which caused her neurological issues. If cancer treatments were improved, and more targeted to specific cancers, rather than so extremely harsh on tiny babies’ brains, this might not have happened to her. So I plan to raise money and awareness for both while I train for this year’s Marine Corps Marathon, http://www.marinemarathon.com/

I will raise funds for CureSearch, the fundraising arm of the Children’s Oncology Group, which still remains my pediatric cancer charity of choice. Their website is http://www.curesearch.org/ And I will raise funds for CURE Epilepsy, an epilepsy research group that allows me to target my donations toward particular types of epilepsy, so that I can funnel our funds to Infantile Spasms research. This is the type of epilepsy that Maddie has and it is one of the most catastrophic types and it is where I want my dollars to go. You can check them out at http://www.cureepilepsy.org/ So in an effort to keep things simple, I hope to raise money to support each evenly. For those of you who want to donate, I’ll be setting up a fundraising page in the upcoming week and I will link to it here when I have it done.

One of my fundraisers is going to be a T-Shirt and athletic shirt sale. I hope to get that up and running in the next few days. Because the race is in late October and November is Epilepsy awareness month, I believe the shirt will be purple, the color of epilepsy awareness.  I’m still working out the details, but there will be youth shirts, and shirts for both Men and Women, cotton tees or technical race shirts. My hope is that others of you who like to run races might wear the shirt during another race to help spread awareness. I am still debating whether or not to try to get sponsors who could advertise on the shirts, which would certainly help me to raise funds, but which would slow down the t-shirt design and ordering process. If any of you loyal readers have any thoughts on this, shoot me an email. The race is sold out, so unfortunately, I can’t really try to recruit more folks to run it with me. But I will be running it with many of my friends from Camp Lejeune, and hopefully Brandon too. It will be really exciting for me to get to run it with people I love, in support of my amazing kiddo.

If the schedule works out, we might try to participate in the CureSearch MileStones walk in Charlotte again this year. Now that we are living in Raleigh, the trip to Charlotte is much easier for us. I’d love to get a good size team together again for that and we could wear our shirts to that too. Though they’ll be purple for epilepsy awareness, they’ll have reference to her battle with leukemia as well.

I’ll be in touch again soon. And I’ll try to update the pics on the blog header too. Love to everyone!

Liz, Brandon, and Maddie