Hadley Hope - Raising Awareness of Niemann- Pick Type C Disease
 

 

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About Us

Peyton, Kayla, Jonah
Peyton Kayla Jonah
God has blessed us with three beautiful children who live with such vitality and enthusiasm that it is infectious to those around them. 

Unfortunately, a terrible disease was following two of our children through infancy into early childhood.  At three months of age, doctors found Kayla had an enlarged spleen.  After numerous negative blood tests, including rare disease testing and multiple exams, she had no other symptoms.  Peyton was noted to have an enlarged spleen at five years of age but was also asymptomatic.

Peyton

Both Peyton and Kayla developed very well, were early talkers and readers, and bright young children.

As Peyton moved through his early elementary years we noticed that he was having difficulty in math and writing, so we began looking into learning disorders and a possible visual impairment. 

We never had any idea three years ago that this terrible disease was manifesting itself in Peyton and Kayla, however, we knew something wasn’t quite right.   It took us two years of assessment exams, numerous appointments with specialists, and many trips to the lab to pinpoint the cause.   A skin biopsy recently confirmed the diagnosis in December 2007.

We waited months to finally hear of the results for Kayla and Jonah.  We were very saddened to hear (March 18th, 2008), that Kayla is positive for the disease.  It confirmed what we knew deep down with her symptoms, but is never easy hearing this news again.  On the other hand, we are happy to hear that Jonah neither has the disease, nor is a carrier; he has neither mutation!! (a 25% chance)  God has shown us His mercy by sparing one of our children, and we are appreciative of all of the prayer warriors storming heaven on our behalf.

Peyton’s hobbies include collecting baseball cards, reading about famous baseball players such as Lou Gehrig, Babe Ruth, Jackie Robinson, and reading the Hardy Boy’s book series.  Kayla began playing violin at age four and joined the Youth Strings, of the Rogue Valley Youth Symphony for the 07’-08’ season.  She also enjoys cheering on the Oregon State Beavers and playing soccer.  Jonah likes playing soccer as well, helping mom and dad outside, and is full of energy (can we tap that?).

Life has slowed for Peyton in recent months, unfortunately, because of his seizures and surgeries.  Thankfully his anti-seizure medications have have been helpful in keeping them controlled, but the medication has taken a toll on his body.  He now requires 11—12 hours of sleep every night.   He still very much enjoys attending School with “all smiles” and never lets a day go by without telling us about the saint for the day.  Kayla is busy with school, acting, and singing, and can’t wait to get started with a new hobby:  horseback riding lessons.  Not that her mom had anything to do with that whatsoever!

 

When we first found out that Peyton, and possibly Kayla and Jonah, may be affected with a life-threatening disease, we were reluctant to tell anyone.  The main reason being that, as parents, we wanted to protect our children from any knowledge that they may die in childhood or early adulthood.  We now know that even though we have this fear, we must do everything possible to help our kids and others medically while still protecting them. 

Therefore, we have formed a non-profit corporation which allows us to raise awareness and funds for research, therapies, medication, clinical trials, and research that may potentially provide a cure for our children as well as others in the U.S. and around the world.  We are on a mission to find potential therapies, and possibly a cure for this terrible and devastating disease.  Won’t you join us?

Hadley Hope is a Federal non-profit 501(c)3 tax exempt corporation. Tax ID 68-0668891.

 

Kayla2nd      Peyton4th      Kaylaquote      



 


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