Posing for photos with Jim & Jill Kelly

Dear family and friends…

We have certainly felt like jet-setters the last couple weeks with our travels to England and now just returning from Rochester, New York.  In fact, we had three different lay-overs in the Newark airport within one week, making it feel like a second home.

Our trip to New York was a quick one, flying out on Thursday and returning late Saturday…but we had a fabulous time at the Hunter’s Hope Candlelight Ball.  For those of you who are unaware, Jim Kelly, a Hall of Fame quarterback who played for the Buffalo Bills, and his wife Jill had a son named Hunter who died of Krabbe disease.  They started the Hunter’s Hope Foundation in his honor and have used their notoriety and gifts extremely well for the sake of raising awareness of this horrible disease, offering support to families afflicted by Krabbe, propelling research for treatment and cures, while also progressing the cause of Universal Newborn Screening.

Over the last several months Hunter’s Hope has been using one of Judson’s videos to educate doctors, legislators, and benefactors about Krabbe disease and it was an honor to have them invite us to be present on this occasion.  At the Ball, Judson’s video was shown to patrons and supporters, helping raise awareness and funds for the organization.

I was especially moved by the chance to hold Madison, a little girl from Rochester with Krabbe disease.  She is almost the exact age that Judson was when he died and as I stroked her porcelain skin, kissed her soft face, and played with her delicate fingers in clenched fists, the tears poured from my eyes remembering what it was like to hold Jud in those last months.  The onset of Madison’s symptoms began at 6 months of age and she has since lost almost everything, including her smile, but to look upon her face is to see sheer beauty.  I was mesmerized.  As heinous as Krabbe disease may be, these children are incredible gifts and such reminders of that which is truly valuable in this lifetime.  I believe God must have a special place in his heart for little ones who have suffered such as this.  Holding Madison reignited my passionate disdain for leukodystrophies and my desperate cries for God to have mercy on the broken-hearted!

Though I would give anything for the opportunity to hold my little man, it would be amazing someday to know that Judson may have an impact in saving the lives of babies who would have otherwise died of various diseases, but instead their parents will have the chance to hold their children and watch them grow and thrive.

We are so grateful for all the opportunities we have recently been given and praise God for giving us such a wonderful little boy…though our pain is ever-present, we are blessed to see the Lord moving and working within our heartache, using Jud to be a blessing in multiple ways.

Praise God for his mighty work!!  We continue to surrender our hearts to him.

With love and gratitude,
Christina (on behalf of Drake too)

P.S.  A special thanks to the Hunter’s Hope staff:  Jacque, Kelly, Caitlin, Andrea, Krista, Tiffany, and Michelle.  Along with all the volunteer staff, especially Edie, Patti, Chris, and Erin!