Our daughter, Lettie, is 3 years old and a happy, bright and bubbly little girl. In June 2018, after investigations into why she had never been able to walk, Lettie was diagnosed with SMA (spinal muscular atrophy) type 2. SMA is a degenerative condition that causes all the muscles in the body to weaken including the ones responsible for swallowing and breathing. The doctors cannot say how fast or when the weakening will take place. Lettie already does not have the ability to walk through the extremely low muscle tone in her legs.

There is no cure for this condition. There is a drug, Spinraza, that is been given in other countries that can significantly slow its progress but here in the UK NICE have refused it on the grounds of cost.

Lettie has a sister, Devon and two brothers, Luke and Josh. As a family this has been the hardest thing that we have ever had to deal with. I wont say come to terms with, as honestly I am not sure we will ever get to that stage. At the moment we just feel helpless.

Finding out that the NHS and local authorities don't even provide essential elements like suitable wheelchairs and other essential equipment for her needs has made this year much, much harder for us as parents and it seems like you have to fight and organise everything just to get what to a disabled child is an essential requirement to live a normal life.

We have waited months and months just to have Lettie assessed for a wheelchair, In the meantime at 3 years old, Lettie has to be carried or crawl on the floor which frustrates her as she cant keep up or interact with her peers. Finally when we had an assessment, the local authority offered a chair that her own physiotherapist says is totally unsuitable for her needs. Due to her muscles having low tone her physio advises that she wont even be able to self propel this chair due to its weight meaning she still wont have any independence. SMA also causes scoliosis of the spine and the offered chair in the physios opinion would not give her the required support. Letties physiotherapist arranged an assessment within a disability centre for a chair that is suitable for her needs. Lettie has tried out these lightweight chairs and is able to self propel them and her little face lit up being able to move around herself. These chairs though wont be funded by the local authority even though a medical professional has stated in writing that what they are currently offering is not suitable for her to live an independent life. This means that for Lettie to be able to live an independent life we have to fund the £3000.00 cost or go through a long process to ask already stretched charities to help us fund it.

This is the same for all Letties needs and every piece of equipment it seems and we have many more equipment assessments coming such as a car seat assessment next week. Yes every family has to fund a car seat for their children but these specialised seats carry ridiculous price tags of thousands of pounds and are not funded at all. Its such a worry when these pieces of equipment will only last her a few years and then we are back here in the same position yet again.

Its all such a fight, a cost and a worry at a time when as a family you're already falling apart trying to deal with a diagnosis and coming to terms with the reality that your child may not make adulthood. I do plan to campaign about these issues in the future to try and change the way this government is treating disabled people but at the moment all our focus is on getting Lettie to a point where she can live her life just like and other child and trying not to fall apart ourselves in the process.

I feel its important to mention due to some unscrupulous people out there that we have set a bank account up specifically for Letties fundraising and we will be keeping a full accounting log of any funds raised and any spent that we will make accessible to anyone that requests it.