Evan's Fight

After a lot of confusion amongst doctors and a misdiagnosis, Kristina Bomgren’s and Justin Bomgren’s son Evan was officially diagnosed with a rare genetic disorder called Angelman Syndrome. Angelman Syndrome is classified as:

“Angelman syndrome is a genetic disorder that causes developmental disabilities and neurological problems, such as difficulty speaking, balancing and walking, and, in some cases, seizures. Frequent smiles and outbursts of laughter are common for people with Angelman syndrome, and many have happy, excitable personalities.

Angelman syndrome usually isn't detected until parents begin to notice developmental delays when a baby is about 6 to 12 months old. Seizures often begin when a child is between 2 and 3 years old.

People with Angelman syndrome tend to live a normal life span. But they may become less excitable and develop sleep problems that may improve with age. Treatment focuses on managing medical and developmental issues.” (Mayo Clinic)

As of right now, there is no cure for Angelman. It is caused by a deletion of the maternal part of chromosome 15. This syndrome is so rare that there are only about 20,000 cases in the entire United States. As a result of the rarity of this syndrome, there are a lot of expenses that are not covered by insurance. 

One of the alternative therapies that Justin and Kristina are providing for their child is Neurofeedback training which is $100 per session. http://www.syracuseneurofeedback.com   This has been proven to help children with Angelman Syndrome by retraining their brain. A child with Angelman Syndrome was having over a hundred seizures a day that weren’t controllable by medication. This child was tiptoe walking, not talking, was having sleep issues, anxiety, and hyperactivity.  After receiving 650 thirty minute Neurofeedback sessions all of her seizures stopped and it began to help her with talking. She was also able to walk normally, run, climb stairs, and sleep better. As a result of the extensive expenses, the parents had to stop the training. Justin and Kristina do not want this for their child and they want what is best for him.  They plan on doing everything in their power to help their precious little boy be the best that he can be. 

Because of the amount of sessions that Evan would need to truly make a difference, they are going to try to purchase a machine and equipment so they can start providing Neurofeedback training from their house.  Their Neurofeedback provider will continue to consult with them and continue to teach them about Neurofeedback. The machine and equipment alone costs about $7,000. Kristina will also be attending a Neurofeedback training in Boston to learn about how to best provide care for Evan. The cost of the training is $2,000. These are all things that are not covered by insurance.

Evan also has major feeding issues and he has constant spitting up and constipation that was not able to be managed by medicine. This has forced Evan’s family to do a natural nutrition route through a nutritionist. She has put Evan on several different vitamin and mineral supplements that are extremely costly and are costing them around $300 dollars a month.  None of these things are covered by insurance, but combined all of these will help to improve Evan's quality of life. 

Evan is also receiving OT, PT and speech through Early Intervention. Their developmental pediatrician would like Evan to receive more PT such as aqua therapy, weight barring therapy, and massage therapy at an actual facility. The insurance company will only pay for 100 sessions of PT and OT combined per year. Early intervention will exhaust all of these sessions which will result in an inability to give Evan the additional therapies that the doctors want him to receive.

Travel is also becoming an issue as the closest specialist for Angelman Syndrome is in Boston where they will have to make numerous trips to get Evan the care that he needs. They also have to travel to NYC and Rochester for other specialists. They are very humble people and they are not ones to ask for help, but they are worried that money will become an issue in getting their child the best care that they can possibly provide for Evan.

Any donations to help Justin and Kristina help provide the very best care for Evan would be extremely appreciated by the family.

Donations

  • janet simiele 
    • $200 
    • 30 mos
  • Anonymous 
    • $115 
    • 39 mos
  • Paul F. DiGiulio 
    • $100 
    • 47 mos
  • Kelly Benjamin 
    • $200 
    • 48 mos
  • Linda Saunders 
    • $50 
    • 48 mos
See all

Organizer and beneficiary

Diane Guido Maw 
Organizer
Cleveland, NY
Kristina and Justin Bomgren 
Beneficiary
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