Howdy folks!

As most of you probably know, I've never been a real big fan of kids. In fact, you could almost go so far as to say I intensely dislike 99.9% of them. But then, sometimes, you get to meet the 0.1% that gives you some hope, and the little bubba that gives me hope is Huné.

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 known cure for SMA.

In the weeks following Huné’s diagnosis, the deterioration in her muscle strength was rapid. She had no movement in her legs, her arms were weak with barely any ability to grip, her neck muscles weren‘t able to support her head - she was completely floppy.

Luckily, Huné qualified for a trial of a new treatment called Spinraza (Nusinersen). This drug is administered via a lumbar punch and means that SMA Type 1 is not always terminal, some babies might even eventually manage to achieve milestones, such as sitting or walking.

So far the Spinraza has halted the rapid decline in Huné’s strength, and we have been delighted to see her regain some movement and strength in her arms.

This is, however, just the beginning of a long journey for Huné. The amount of specialist equipment and care that she requires will only continue to increase.

It is because of this that I want to raise as much as I can for Huné. I've honestly never met such a little bundle of joy in all my life, she just always seems to have a smile on her face, despite what she's going through.

Currently, Huné has equipment for her to sit in for feeding, at night she is connected to a oxygen saturation monitor so her parents know if she is struggling to breathe, and she recently got her own powered chair. This means that for the first time in her life, Huné can move herself around!

On the 20th May Ffion, my better half and Huné’s godmother, and I will be taking part in a 10k run for the Donna Louise Foundation, a charity that has been incredibly important to Huné and her family, providing them with emotional and physical support throughout. 10k may not seem like a lot to some, but for me it's a big task, and one I've been training for and being daunted by for months. There are about 30 of us running in total, with some raising money for the Donna Louise Foundation itself, and others raising money for Hope4Huné, her own personal fund to make sure she has a bright and happy future.

We’ve set the limit for £350 but we want to raise as much money as possible so if you can donate anything at all, it would be amazing and truly mean the world.

Thank you for reading.