William’s diagnoses as a result of this duplication syndrome are many: Global developmental delays, Autism, ADD, immunoglobulin deficiencies, low muscle-tone, precocious (early onset) puberty, and of course, epilepsy. His first seizure at 20 months of age was a big one. He was hospitalized for it. By age five-and-a-half, he began seizure medication. One drug kept his seizures mostly controlled until just before his 8th birthday- when puberty started.
Since then, we have tried different combinations and doses of SIX different anti-epileptic drugs. William’s doctors have tried other methods besides daily medications. William was on a very restrictive specialized diet for seven months. Not only did it have no effect on his seizures, he actually lost an unhealthy amount of weight. A six week trial of high dose steroids once gave William about four months of seizure freedom. However, when we tried another round, there was no reduction of seizures. Earlier this year, his doctors tried ivIG immunoglobulin therapy (two days of intravenous medication), in hopes that a boost to his immune system may have a positive effect similar to his first round of steroids. Unfortunately, there was no improvement.
The nature of William’s seizures changes occasionally. On his 11th birthday (October of 2013), he had the worst round of seizures he had ever experienced. While opening presents that evening, he became violently ill. Surrounded by family, his birthday celebration was cut short. Mom and Dad cleaned him up and got him ready for bed. As soon as his head hit the pillow, he began to seize. We rushed him to the hospital. Initial emergency anticonvulsants had no effect. Finally, after having to bag him through a few major seizures, the correct rescue medication was administered and William slept it off until later the next morning.
William is currently having about 15-20 head-drop seizures a day along with about 2-3 longer seizures a week.
Because of the complexity of his case and his chromosomal abnormality, William has been fortunate enough to be selected for an exciting drug trial! The medication has proven promising for reduction/suppression of seizures in patients like William.
Unfortunately, the drug trial is over 1,000 miles away. William lives in the heart of Iowa. The drug trial is in New York, New York. In order to participate in the trial, William must travel to New York once a month for at least one year, and actually biweekly for 3 of the first 4 visits! What’s more, if the medication works, those in charge of the study have agreed to allow interested patients to extend their participation in the study in order to continue to receive the medication- because, by the way, the medication is not FDA approved yet and therefore not available as a prescription medication. Being able to continue to receive medicine that works is great news for patients who benefit from it, but that means continued monthly trips. The clinic running the study can only distribute one month’s supply of the medication at a time and the protocols of the study require the patient to be seen personally in the clinic.
Your Help is Needed!
The cost of round-trip flights may vary to some degree for every trip; we may even find some discounts for booking in advance, but it is safe to say that the average cost per person is going to be upwards of $400. Since William can’t travel alone, we can expect to double or triple that cost for every trip. Once we get into the process, we hope to reduce costs by sending only one parent along with William for the trip, but for the first few trips, both parents will be traveling with him. Participation in the study for one year means a total bill for airline travel of at least $12,000. Any donation will be helpful, if you prefer to purchase gift certificates or gift/transfer airline miles please use American Airlines or Delta Airlines as they seem to have the most flights available.
Sometimes William may be able to fly in and out on the same day, saving the need for hotel expense. Also, the clinic running the study has a program in place to allow a free overnight stay at a local hotel on a limited, first-come-first-served basis. We can’t always count on it, but we do have it reserved for three of the first four trips.
Incentives and Updates
We are so fortunate to have a service like gofundme available to help us get William the medical help he needs. We are certainly under some pressure to get this campaign started. Our first four trips are scheduled for mid September, late October, and mid- and late-November. We are working on coming up with some special incentive gifts for our donors. Don’t worry about waiting for updates on the details. We will apply incentives retroactively. And we will be using William’s gofundme page to keep you updated on progress!
Feel free to contact Karen or Will through this gofundme page with any questions. Thank you so much!
DonationsSee top donations
- Konrad Christensen
- Scott and Jessica Erickson
- Susan Carlson
- Amber and Mike Medici
- The Heckenlaible's
#1 fundraising platform
More people start fundraisers on GoFundMe than on any other platform. Learn more
Expert advice, 24/7
Contact us with your questions and we’ll answer, day or night. Learn more