Dallas's Fight Against Canavan Disease

If Dallas’ smile could save him, he would live forever.

Unfortunately, all we can do is give him the BEST life possible

My name is Kianna, and my family needs your help…

Almost 4 months ago, Ryan and I received news that no parent should ever have to hear. Our sweet, beautiful 10-month-old baby boy is dying. We are living literally every single parent’s worst nightmare.

On June 30th, 2021 (at 7 months old) our only son Dallas was diagnosed with Canavan Disease. A fatal, and extremely rare genetic neurological disorder. It is caused by an inherited gene mutation that prevents the brain's nerve cells from properly sending and receiving information. Canavan Disease begins in infancy and progresses rapidly. As Dallas’s disease progresses, he is expected to experience seizures, blindness, difficulty eating solids or swallowing liquids, an abnormal increase in muscle stiffness which will lead to his inability to move voluntarily. Things he could once do, he will lose the ability to do as his brain deteriorates. He will never walk, talk, crawl, or sit. There is no cure for Canavan disease and treatment is symptomatic and supportive. Children with this condition die in infancy or early childhood – most do not see their 10th birthday. This condition is so rare, that many doctors have never even heard of it. In fact, I was told that there are currently only 300-500 documented and active cases in the entire WORLD.

I could go on and on about how incredibly hard the last 4 months have been. The pain and the fear that someday I am going to lose my son is unbearable to even think about. And to know all the challenges he will have to face in his short life. It is truly heartbreaking. I can literally FEEL the sadness in my heart, and I am sobbing as I type this. But I have to be strong for my family and my son. Whatever we are going through is NOTHING compared to what he goes through daily.

Dallas is almost 10 months old. He can’t sit, crawl, roll over, and has poor control of his head. Over the last month, he has started uncontrollable tensing and stiffening of his muscles which is referred to as dystonia. Dallas also has optic nerve atrophy which causes vision loss, and his eyes will sometimes cross and shake – all symptoms of this terrible disease.

He is our miracle baby and our little fighter! The boy will light up the world with his beautiful smile and sweet giggles <3 He’s faced challenge after challenge since before he was even born (6 weeks premature), and he will continue to be challenged throughout his entire life. With everything he has been through, it amazes me that he is ALWAYS smiling and laughing. Especially at “funny” noises like a cough or sneeze or horn beep. It is the cutest thing! And his smile is so genuine and pure it is just contagious. He brings joy to the lives of everyone that cross his path. When I am having a bad day, I think of him. The world is full of challenges and hate but nothing could compare to what he is going through. He is literally stuck in his own body, WANTING to move but being unable to. And sometimes It is frustrating for him. He gets mad when he can’t do what he WANTS to do (like hold a toy) But he still tries SOOO hard. And he is always so proud and happy when he learns new things at PT. All he wants to do is move and laugh and SMILE. He is my hero.

Dallas also has 3 big sisters. Emma (7) Autumn (10) and Bre (16) They absolutely adore their baby brother. One of the hardest things I have EVER had to do was tell them how sick he is. It was incredibly painful to see how heartbroken they were. And they asked me questions I couldn’t answer – And I still can’t… We don’t know how much time we have with him or how fast this disease will progress. We just know that one day, far too soon, god is going to bring Dallas to heaven, and we will be faced with the unimaginable pain of saying goodbye to our only son and baby brother. This family is devastated, my girls are devastated, and we need your help making the absolute BEST of the time we have on earth with our precious little boy.

The funds raised by this GoFundMe campaign will allow us to give our son Dallas the best possible life. Free of financial burden so we can focus on each other and his health. Donations will go towards his medical expenses and other necessities that are deemed medically unnecessary (handicap vehicle for his wheelchair, ramp to access our home), lost wages, and MAKING MEMORIES that we can cherish as a family.

My HOPE is that you will be touched by our family’s story, inspired by Dallas’ strength, SHARE HIS STORY, and do whatever you can to help our family give him his BEST life.

PLEASE SEE THE LINKS BELOW FOR MORE INFORMATION ON CANAVAN DISEASE:

Genetic and Rare Diseases Info Center

Canavan Research Organization

Canavan Foundation

THESE ARE TWO CLINICAL TRIALS WE ARE CURRENTLY CONSIDERING:

ASPA Gene Therapy for Treatment

CANaspire Gene Therapy Treatment

Funds raised will also help our family participate in a potentially life-changing gene therapy clinical trial. The one we currently meet requirements for would require an extended 1.5-2 month stay in an out of state hospital) We are still waiting on more genetic test results to determine eligibility for the other. When we’ve made a final decision, we will share the details here.