Judson's Legacy

Hunter’s Hope Candlelight Ball


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!


5 Responses to "Hunter’s Hope Candlelight Ball"

  1. Marilyn says:

    Seeing the pictures of all those brave parents reminds me of Erma Bombeck’s book, "Motherhood, the Worlds Oldest Profession." One story told of the angles gathered to deliver newborn babies to expecting mothers.
    Finally God came to the little ‘special needs’ baby.

    "This one," He said to the angel, "will go to Linda."

    The angle questioned, "But Linda is such a happy girl."

    "Exactly." He replied.

    Sometimes we wonder if He hasn’t overloaded parents of children with illnesses… I think He knows who will be ambassadors for LIFE. You are the truly special ones, the chosen few.

  2. Lora says:

    Having lived with my son’s disease, SMA, for 13 years, I can so relate to this post. Many times I have thought about how God must feel towards children who go through so much suffering. We often wonder what it will be like to see our son take his first steps in heaven and how wonderful that will be! Children with special needs are so precious and truely teach us all so much. So many with SMA also lose the ability to smile or show expression. Having my son has taught me to be thankful for even the smallest things, like the ability to smile. We think of you and your family often and pray for you often! Thank you for sharing your son and his story!

  3. Jean and Gary Butler says:

    WOW…not sure where to start this post. First of all, you and Drake look so great. You are just two beautiful people inside and out.It was so touching Christina to see you holding that little one. I just thought of the song "Jesus loves the little children"….oh does HE ever!!!!!! I told Gary that I want to take care of the babies when I get to heaven…I can hardly wait. Jud sure accomplished much in his short time on earth.I know you are both so proud of your little one!!!!!!!
    We love you so much~
    Jean and Gary

  4. Charles Adelseck says:

    I look at the photo of you holding Madison and my eyes move from her angelic face to the pendant you are wearing with Jud’s picture. Memories flood my mind and tears flood my eyes. You are holding Madison in almost the exact position as you held Jud when he took his last breath – when he transitioned into the arms of Jesus. Maybe Jud never felt a change in the loving arms that embraced him, but opened his eyes to gaze upon the face of his loving Savior – and all pain was gone.

  5. Jodryn Craighead says:

    God Bless both of you!! I am sp inspired, because just recently my friend’s brother was diagnosed with krabbe diease and he has seen Judson’s stroy and he said" I hope I can be as brave as Judson." ANd I just wanted to let you guys know that even though Judson is gone he is still an inspritation to kids all over and even some adults.

    Keep up the amazing work!! God Bless

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