Hi, I'm Riael,

Recently, my lovely friends Sukanya and Rao received the devastating news that their daughter, little Tanya, had been diagnosed with SMA (spinal muscular atrophy type 1). This is an extremely rare, life-limiting condition that requires lots of medical attention, appointments, and equipment to give Tanya the best chance at life.

Now is a time for Sukanya and Rao to be focused on giving Tanya the dedication and love she needs to get through. Unfortunately, the world keeps on turning, and bills still need to be paid, specialist equipment, and that much-needed coffee.

Please help to support this lovely family at this uncertain time in their lives. Help us to give Tanya the hope that she deserves.

Here is Tanya's story so far:

On the 23rd of August 2024, at 5 months old, Tanya was diagnosed with

Spinal Muscular Atrophy Type 1 (SMA). This is a rare, genetically inherited neuromuscular disease for which there is no cure. In SMA there is a lack of a protein that is essential for the health of motor neurones, therefore meaning that over time the disease progresses and motoneurons die. The loss in functioning motor neurones leads to muscle atrophy and weakness and affects the muscles used to walk, to move arms, hands, head and neck, to breathe and swallow, and to maintain body temperature.

Not that long ago, there were no treatments available for SMA meaning babies would unlikely see their 2nd Birthday, thankfully this has changed and Tanya will be receiving a life changing treatment soon called Zolgensma, this replaces the missing or broken copy of the SMN1 gene with a healthy one, which restores the production of the SMN protein. This protein helps motor neuron cells in the spinal cord and brainstem function properly, improving muscle and nerve function.

SMA is a condition which creates a multitude of healthcare concerns, all of which are complex. This means that over the years Tanya will be required to attend many hospital appointments, and local healthcare appointments to be able to maintain the standards of care for those affected by SMA.

There is the possibility that Tanya may gain some motor improvements, however these will be small and over a prolonged period of time.

Parents are hoping to be able to provide Tanya with additional physio and hydro therapy, intensive courses, and specialist equipment to give her the best shot & get Tanya to her absolute potential. These come at a great cost therefore any funds raised will go towards this!

Thank you for taking the time to read Tanya's story.

Together we can help give Tanya and her family the support that they need.