Our beautiful baby girl, Huné-Deandra Gascoigne, was born on the 11th November 2016. She was diagnosed at 8 months old with Spinal Muscular Atrophy.

SMA Type 1 is the biggest genetic killer of infants.

80% of babies with this defect typically die before 12 months and the remaining 20% before their second birthday.

This is due to the degenerative loss of muscles; starting with the arms, legs and trunk of the body, then moving onto swallowing and the respiratory system. The brain is not affected, and they have been tested to have at least average to above average intelligence.

There is no cure for SMA and there is very little in terms of treatment.

We are hoping that Huné will qualify for a treatment called Spinraza (Nusinersen). This drug is administered via a lumbar punch and means that SMA Type 1 is not always terminal, some babies even eventually manage to achieve milestones, such as sitting or walking. The hope is that with the help of Spinraza, babies will progress from SMA Type 1 to SMA Type 2 and so on.

Huné is very bright, extremely happy and in no pain. This is what is most important to us.

Huné has never rolled over or sat up. She has now stopped kicking her legs, has weak arm muscles and grip and is struggling to support her head. This means that Huné spends a lot of her time lying down, as this is how she is most comfortable. Thankfully, Huné is a very strong SMA Type 1 baby, she can still move her arms and at the moment does not require a feeding tube or any assistance with breathing. She has specialist equipment for her to sit in for feeding and at night we connect her to a oxygen saturation monitor so we know if she is struggling to breathe. This is however only the very beginning of a long journey and we are aware that the specialist equipment and care that she will require will only continue to increase.

Your support and contributions will help Huné with medical equipment and mobility support. Your generous donation will fund our mission to ensure Hunés happiness and well being.

Any funds raised here we would like to halve. We would like to give this half to Donna Louise and The SMA Trust. Donna Louise will be providing us with the emotional and physical support we need, whilst The SMA Trust require the funding to keep researching for treatments and cures.

We also hope to then host other fund raising events, which will raise money for any other charities that will be supporting us on our SMA journey.

We must thank our truly amazing family and friends, we are forever in your debt for the support and help when we have felt truly broken, desperate and lost. We love you all dearly. Everyone is and has been so supportive and we are honestly so touched and would be lost without you all.

With that we will leave you with some words from Shakespeare that truly match Huné and her incredible strength so far. To say she isn't a typical SMA baby is an understatement and does not do her justice. She is so strong, so happy and truly an inspiration to all.

"Though she be but little, she is fierce"