Only 4% of Federal Research Funding is Dedicated to Pediatric Cancer and the 5-year Survival Rate is 2%.  Rare Pediatric Diseases are Mostly a Death Sentence for a Life that Never Began.

Today is a terrible anniversary for my dear friends, Chris & Chantal Pittman.

Gunnar1

My family was entrenched in the diagnostic odyssey and desperately searching for answers when my path crossed with Chantal.  We both belonged to a Facebook support group for children with developmental delays.  Chantal and I had sons, nearly the same age, with identical symptoms and became instantaneous friends.  We compared notes about physical therapy techniques, nutritional challenges and provided needed encouragement.  I was nearly certain Gunnar and Maxwell had the same disease.

Eventually we received Maxwell’s diagnosis of SLC6A1 and Gunnar was diagnosed with different mutations.  After our diagnosis, Chantal was my first hysterical sobbing phone call.  Chantal dug into the literature along with me, reached out to her network and helped me decipher a to-do list. The sound of her British accent made me feel more at ease.

During the Spring of 2019, Gunnar was diagnosed with a rare brain cancer.  I remember where I was standing when I saw Chantal’s text.  The blood drained from my body as I stood in disbelief and panic.  How could this happen? They had already survived so much?   There was nothing that could be done in time for Gunnar.  He barely made his Make-A-Wish to meet Cookie Monster. Gunnar passed away one year ago today.

I flew to Wimberley, Texas to be with Chris and Chantal for Gunnar’s celebration of life.  We were standing together when Gunnar’s casket arrived.  The casket was so tiny, maybe 3 feet long and draped with the Texan flag.  We stood in silence, contemplating the gravity of the moment as guests started to arrive.  Friends and family brought cookie monsters to be donated to a local children’s hospital.  The cookie monsters were set around the casket and reminded us of the silly little boy that was laying before us.

Only 4% of federal research funding is dedicated to pediatric cancer and the 5-year survival rate is a mere 2%.  About 50% of all rare diseases affect children and only 30% will live to see their 5th birthday. Rare pediatric diseases are mostly a death sentence for lives that never began. 

One of my personal heroes is Sharon King, co-founder of Taylor’s Tale.  Her daughter, Taylor, passed away from Batten’s Disease.  Sharon once described a picture of Taylor in the hospital as the reality of rare disease when there is no research, no treatment and no hope.  I will never forget her words.

The picture of Gunnar’s casket is the soul crushing reality of most rare pediatric diseases when there is no research, no treatment and no hope.  Parents are the driving force of creating hope for generations to come after us.

Today, we remember Gunnar’s life, feel the significant impact he left behind and hold our children a little more tightly. Tomorrow, we fight even harder in memory of children of like Gunnar and Taylor.


SLC6A1 Gene

I am a mother of a beautiful boy with an SLC6A1 mutation and I am dedicated to finding the best treatment possible for my son.

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