Aidez Juliette à recueillir des fonds

Our son, Hugo is a fun, spirited boy who wears his emotions on his sleeve and adores being surrounded by his family and friends. 

Hugo has a genetic disorder called NF1. Neurofibromatosis is a genetic disorder which affects the skin and the nervous and skeletal systems.

Even though he is not a fan of the many doctor appointments, he remains relatively unaffected by the illness to date and partakes in the fun and games that any little boy his age would. :) 

That said, NF1 is a complex and anxiety ridden disorder as there is no cure, nor any way to anticipate how it will evolve or manifest in the future.

Whilst NF1 is considered a rare disorder, it affects 1 in 2500-3000 births. Since it manifests in each individual in very different ways (even within the same family), awareness remains low and funding for research is limited. 

Today, I walk (still can't run after my recent pregnancy!) for a few reasons:

1. To show my son that I support him.

2. To raise awareness for NF1. 

Not everyone needs to know the details of the illness but I would like to encourage us all to be a little more empathic and a lot more accepting of physical difference. By creating a more open and accepting society, we make it more viable for those with physical ailments to live happily.

3. To raise funds for the ANFQ, an association that seemed to be the only source of information and support when feeling quite lost and alone faced with this distressing news when Hugo was only 15 months old.