Hope for Chrissy and Amanda

07/09/2017

02/28/2017

It's World Rare Disease Day!
Wear jeans! Read up on rare disease legislation and research!
Donate to a charity that supports rare disease research, treatment, and patients! May I recommend Hannah's Hope Fund?
www.hannahshopefund.org

02/22/2017

We got some good news this week:
Amanda is getting a wish granted from Make A Wish, and Chrissy is being honored by NORD with the Rare Impact Patient Award. Amanda will receive the award on her behalf.

02/13/2017

One year ago today we lost Chrissy. She will live on in the hearts of those who were lucky enough to know her, or hear her story of courage and love and kindness.

02/08/2017

Our friend Lottie passed away this morning. Chrissy is showing him how much fun it is to run on the streets of Heaven.
Fly sweet angel

02/07/2017

Amanda is ready for the 100th day of school tomorrow.
Chrissy would be ecstatic that we found a use for the Shopkin bags!

02/04/2017

Amanda the dancer

11/15/2016

Apologies for the lack of updates.
Since we lost Chrissy it has been hard.

On October 18, Amanda received her gene therapy at the NIH.

She is doing well following the injection and we are hopeful.

02/18/2016

We have the details of the service honoring Chrissy's life that's going to take place in Texas.
Visitation will take place at Greenwood Chapel, 3100 White Settlement Rd, Fort Worth, TX, from 6-8PM on Tuesday, February 23rd.
The memorial service will be held at First Baptist Church Euless, 1000 W Airport Fwy, Euless, TX 76039, at 1PM on Wednesday, February 24th. Graveside service to follow. Internment will be at Greenwood Memorial Park.

09/13/2015

Today is a big day.
Today, for the first time ever, a person who has lost nerve function has regained it.
Chrissy took two steps.
She has not walked in two years, but today, she took two steps.
God is amazing, and so is Steven Gray.

06/30/2015

Happy happy birthday 🎂 to Miss Chrissy! We love ❤ you!

06/29/2015

Tomorrow Chrissy will be 10 years old. She is the most precious child you could know. Sweet, loving and so very brave.

Mommy will be taking her out on Wednesday (tomorrow we have testing and appointments at NIH) for the annual birthday march. Please message Kathy Alvey if you want to be part of her celebration.

Birthday party is coming up for the release of the Minions movie!