Action for Adelyn

Adelyn has been diagnosed with a very rare, but serious seizure disorder called Infantile spasms (IS). Infantile spasms usually occur in younger children, under the age of one, but the average age of onset is around four months. Infantile spasms are rare in the fact that only about 1,200 children, in the US, are diagnosed each year. When most people, including myself, think of a seizure disorder, they think of someone falling to the ground and having complete body convulsions. With IS, the appearance is very subtle, and can often times, be movements that one would expect an infant to make, which can make it difficult for parents to recognize that it is a serious problem. My main question was, do the doctors know what the cause is behind it? In Adelyn’s case, no, they do not know what the cause is, but they said that is a good thing. If there is a cause behind the diagnosis, it becomes more difficult.

Chelsea and Matt have had to make some extremely tough decisions about the route they wanted to take in treating their baby girl. Adelyn is currently staying at Children's Hospital of Wisconsin in Milwaukee. Chelsea and Matt are working with a great team of neurologists, including a doctor that specializes in IS, and has done published research in this area. They are having to stay at the hospital until their insurances approves the medication that Adelyn is currently on. The medication the doctors are trying is expensive, around $15,000 per dose, and she is receiving it twice a day. If this doesn't do what it is supposed to (and we are all hopeful that it will), then Chelsea and Matt have to make the decision to try another medication, which is $30,000+ a dose. Along with their pretty price tags, the medications also have the potential of serious side effects including vision loss. You might ask yourself, why does she need medication? Well, the doctors did say that the seizures will disappear by the time she is 2 automatically, but seizures cause severe damage to the brain. If left untreated, Adelyn would experience developmental delays and would not continue to show growth that she otherwise is capable of. Adelyn will continue to have weekly doctor appointments to monitor her progress. She will also have to partake in eye exams to make sure the medication isn’t affecting her vision at all. Both of these are critical for Adelyn, but also both take time that require both Chelsea and Matt to have to take off more work.

I ask you to please help in any way that you possibly can. Since Adelyn is only almost 6 months old, her parents (Chelsea and Matt) are just coming off of maternity and paternity leave, so their vacation time has been depleted. While, emotionally, they would love to be home with Adelyn every day, financially that is not an option. One of Adelyn's grandmas has graciously adjusted her life and schedule to help give Addy and her family the help and support they greatly need at this time.  

One of the many difficult parts about Infantile spasms is that Chelsea and Matt are unaware of what the future will bring. There are no concrete answers.

Thank you so much!! We can't thank you enough for the love, support, and prayers we have and are receiving during this difficult time. I keep saying, it's just a bump in the road on this crazy journey called life.

If you don't feel comfortable donating on this page, but would like to make a donation, please contact me (Missy), and I will make sure Adelyn receives your generous donation. 

 

“Though she be but little she is fierce.”

Donations

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  • Michael Bruening 
    • $55 
    • 36 mos
  • Pat and Kathy Nord 
    • $50 
    • 37 mos
  • Chad Voight 
    • $100 
    • 37 mos
  • Anonymous 
    • $50 
    • 37 mos
  • Jody Nour 
    • $50 
    • 37 mos
See all

Organizer and beneficiary

Missy Schmitz 
Organizer
Sparta, WI
Chelsea Bodoh 
Beneficiary
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