Nevaeh's New Home

This is Nevaeh! She is a beautiful 9 year old. She was born a healthy 9 lbs and thrived for the first 6 months of her life. Soon after my family noticed that she was not meeting her milestones.  At one year of age, my sister and husband started investigating and went from paediatrician to paediatrician... they couldn't find anything wrong other than she had a global developmental delay.
At the age of two she was able finally to drink from a sippy cup and eat with her hands, crawl,  and pull herself to stand....those skills soon vanished when that summer she began with seizures and was diagnosed with epilepsy that fall. The first meds that she was put on only increased her seizure activity and decreased her fine and gross motor skills that they worked so hard to obtain.
The 2nd and 3rd medications that she was put on also did nothing but worsen the situation but cause loss of blood flow to her hands and feet intermittently.
She was then put on the ketogenic diet for 2 years, for the first year it was wonderful with seizure control but none of her skills returned, unfortunately. After a year, seizures returned and they weaned her off to start Pre-K that fall.
Seizure activity increased, she even extracted 3 of her lower baby teeth from having her fingers in her mouth when seizing. The next trial of meds obviously wasn't working either.
Shes been to Toronto for CME therapy and to Georgia for hyperbaric chamber therapy. They then purchased a chamber for their home and saw a decrease in her seizures and a little smile began to emerge again.
Now Nevaeh is on one medication, but isnt seeing much of any seizure control. A large seizure just after Christmas  2013 resulted in a fall from a chair and she extracted one of her front teeth along with split head, lip, and bruises. A root canal was needed to save the front tooth.
Nevaeh has been tested for Angelman Syndrome and Rhett Syndrome..both tests came back negative so they  have yet to receive any specific diagnosis other than epilepsy and global developmental delay. They are awaiting results for a CGH array analysis testing. 
Today Nevaeh relies solely on the help of her caregivers for all life's tasks. As she continues to grow  these tasks get more challenging, as a result they are currently building a barrier free home to accomodate her growing needs. This home will include a lift system, fully accessible bath, therapy area and space for a track system in the future. With this type of home comes great cost, non of which is covered by any government funding.
With no answers In regards to my nieces condition and the stress of her ongoing care and seizure activity on my family, I appreciate your support.
  • Holly Wolfe 
    • $200 
    • 75 mos
  • Holly & Mike Wolfe 
    • $300 
    • 76 mos
  • Mother Teresa Parent Council 
    • $250 (Offline)
    • 77 mos
  • McGoverns RV & Marine 
    • $3,600 
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  • Cathy Sheardown 
    • $500 (Offline)
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See all

Organizer

Sharon Siebert 
Organizer
Grande Prairie, AB
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