As you all know, Baby Presley has been through so much in her short time here on earth. She was born a perfectly healthy baby girl. At 3.5 weeks she began to have multiple seizures and it just progressed from there. Angie and Jason have found a doctor in Boston that can help her, but the cost of getting to Boston to see the doctor is hefty. I am hoping that we can all come together and help them raise the funds so they don't have to stress about getting her the best care. I asked Angie to send me some info about Baby P, these are her words (see below). Every little bit helps!!
All funds will be used for travel and hotel expenses for the trip to Boston and for care for Baby P. Anything left from the trip will go toward a service dog for Presley.
I don’t know what to say about baby P. I would sell everything I own to get her to the specialist in Boston. She has a genetic disorder called Tuberous Sclerosis Complex, which causes tumors to grow throughout her vital organs. She has multiple types of brain tumors, heart tumors called Rhabdomyomas, and cysts in both kidneys. She has severe intractable epilepsy that we have been battling since she was 3.5 weeks old. Each new medication introduced tends to only be effective for a little over a week. Presley had a large portion of her left brain removed to help control the focal seizures she was suffering from on Feb 16th.
Most recently she began having infantile spasms, which has caused her to regress significantly in both physical development and cognitive development. Infantile spasms are the most catastrophic of all seizure disorders. Our beautiful baby had stopped smiling and cannot hold her head up very well at this point. A physician that specializes in Tuberous Sclerosis Complex in Boston was able to review her videos and helped encouraged her current physician in Arizona to start treatment with a medication that has given some relief from the spasms. Unfortunately, the spasms have returned and we have increased her medication again.
We were able to get an appointment to see the specialist in Boston in May, and we are hopeful that with her care and expertise Presley can continue to have a chance for quality of life that is taken from so many children with this disease.
DonationsSee top donations
- Brent Brewer
- Evans Family
- Mildred Brewer
- Robin Carek
Fundraising team: Team Presley (3)
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