*Update as of May 10, 2019*
Berkley has been accepted into the Leukodystrophy clinical trials at the Children's Hospital in Philadelphia, and is receiving ongoing care there and at her local hospital in North Carolina.
Their current financial needs are:
- A specialized hoist system to safely lift Berkley in and out of bed and the bath.
- An ADA compliant, wheelchair accessible vehicle.
- An ADA compliant, wheelchair accessible home or improvements to their current home.
- Ongoing expenses related to medical care at the Children's Hospital in Philadelphia: Plane tickets, food and lodging, medical expenses associated with clinical trials not covered by insurance.
- ***Loss of income during clinical trial visits*** Josh has limited PTO, and so any time away from work will be unpaid. As a small business owner, anytime Taylor is away from work in unpaid.
On July 25, 2018, Berkley Chapman was diagnosed with Leukodystrophy disorder, specifically Aicardi Goutieres Syndrome. She and her parents, Josh and Taylor, are so loved by their friends, family, and community! Inspired by this incredible outpouring of love, this GoFundMe was created in order to lessen the future financial burden on their family. It is our honor and blessing to rally alongside Taylor and Josh and bless them financially and prayerfully while they focus 100% of their attention on being the best parents Berkley could ever have.
Please send your notes of encouragement and love directly to Josh and Taylor. Any financial or fundraising questions may be directed towards Josh's cousin, Nicole Hope, as she manages this campaign.
You may reach Nicole by email: [email redacted].
To hit our goal, we need:
1 - $5,000 donor
5 - $1,000 donors
20 - $250 donors
100 - $100 donors
200 - $25 donors
100% of all funds donated through GoFundMe will be given straight to the Chapmans, minus a 2.9% credit card processing fee. If you would like to make a donation by check for $1,000 or more to them directly, please contact Nicole Hope to set that up.
Psalm 62:1-2 "My soul finds rest in God alone; my salvation comes from him. He alone is my rock and my salvation; he is my fortress, I will never be shaken."
From Taylor and Josh:
"On July 25th 2018 we received news that we as parents, never thought we would ever hear. We have questioned whether or not to share publicly but we feel like the more people who know, the more people will be praying.
Our Berkley has been diagnosed with a Leukodystrophy disorder, specifically Aicardi Goutieres Syndrome. It is a rare, terminal genetic disorder that usually results in severe mental and physical handicap.
Josh and I have really struggled to cope with this news. We know that God’s plan is perfect and we have and will continue to trust in Him.
The other upsetting news we received relates to Josh and I. With this being a genetic disorder, the genetic testing results showed that we are carriers of the AGS gene. Any future children would have a 25% chance of having this syndrome. For someone who has always wanted a big family, I now question whether it’s worth it to even try for more children.
We have been searching for the next steps to take to help Berkley thrive and be happy while she is here with us. We have found that the Children’s Hospital of Philadelphia is the place to be. The have a Leukodystrophy center that specializes in AGS, and while there is currently no cure, they are conducting clinical trials. Please pray with us that we can quickly get an appointment with them and also that we can work things out logistically and financially.
Lastly, we want to thank our family, friends, church, and work family for helping us through this really difficult time. We know there are no words anyone can say that will make this situation better but please continue to pray for us to have strength to face the tough roads ahead."