My name is Chris Brannigan and Hasti is my daughter, she is just 9 years old and Hasti dreams of being a chef and a dancer. Hasti also has a rare life-limiting and life-shortening genetic condition called CdLS. I'm fighting to make sure she gets the treatment she needs so she can overcome her condition and realize her dreams. I'm marching 1,200 miles from Bar Harbor in Maine, to Jacksonville in North Carolina carrying 55lbs of kit (all I need live on the road) on my back to raise funds to develop a gene therapy for Hasti's condition, and I'll be doing it BAREFOOT.

 


CdLS is characterized by reduced growth, premature aging, sever anxiety and self harming, global developmental delay, feeding problems, seizures, speech and language difficulties and so much more. It is rare for children with CdLS to become adults who live independent lives, often needing round the clock care for their entire lives. No cure or treatments exist for this terrible disease which occurs in one in every 30,000 live births, and we are committed to change that so that all children with CdLS  can enjoy better lives. But to do that, we need your help. We are raising funds to pay for the research to create a treatment for this disease with the Jackson Laboratory in Maine and the clinical trials that will follow. 

OUR STORY

Hasti was born in December 2011. She was born underweight despite being born full term and there was no questioning that she looked different from other babies. We knew from there first few moments with her in our arms, that all was not well with her.

Watch our story here,

In the initial weeks following her birth, her challenges began to become clear. We were in and out of hospital and ICU so many times.  

In April of 2012 I deployed to Afghanistan 

on operations, leaving my wife at home to cope with these problems and two other boys, at that time aged just two and four. I had to be flown back home  from Afghanistan unexpectedly when 

Hasti was hospitalized and taken to intensive care

, but after just two short weeks I had to leave the family behind again to return to Afghanistan and serve my country. 

We had no diagnosis for 7 years. Finally the day we received the diagnosis for CdLS was the beginning of 

the most terrifying period of all our lives. 

 The bottom fell from my world as I realized what this would mean for Hasti, but I also knew then that I had to do everything I could to save her from this fate.

The future isn't bright; Hasti has a rare form of this already rare disease, and little is known about how this will affect her in the future. Some older children with the same diagnosis are reported to have suffered mental regression, extreme social anxiety, self damaging behaviour and becoming selectively mute. Beyond that could be worse still, but no one knows and without a treatment 

we fear the worst. 

As there are currently

 no treatments for CdLS,

 we have decided that we need to fight for one. Despite having deployed on operations before, this certainly is the hardest battle of my life. I have made it my mission to change Hasti's fate.   We are creating a gene therapy for CdLS that will benefit those currently suffering with this disease and the children who will receive the diagnosis in the future.

Don't let this disease rob anyone else of the life they deserve. Help me to fight this battle to change my little girl's fate!

#HopeForHasti