As most of you know by now Nyla was born with a rare neurological condition called Sturge Weber syndrome. Nyla was fast tracked for brain surgery at Great Ormond Street and had the 10 hour operation at 8 months old in June 2021. Nyla was having uncontrollable apnea seizures due to her condition so the decision was an easy one in the sense of she needed to have this done to save her life. Nyla will always be at risk of seizures due to her condition.

Along with the condition Nyla has had many other medical issues along the way. Hypoglycaemia, 3 episodes of Anaphylaxis needing emergency treatment. She has had coronavirus twice, one of them she also had pneumonia with it. Nyla also suffers with SVT’s (super ventricular tachycardia) to which she is on beta blockers daily for. Numerous severe chest infections with countless hospital trips and stays. Nyla also is hyper-mobile which in turn with collapsed arches and bowed legs has meant she has splints that she has to wear daily and will always need walking aids, what that will look like in the future we just don’t know. Nyla’s hips are also currently out of line which is being closely monitored.

As you can imagine all of the above has had a detrimental impact on Nyla’s development both mentally but also physically. Nyla cannot walk by herself. Nyla needs constant care with daily tasks due to these delays. We are working hard on her communication to which she says a lot of words but not to where she should be but she also tries to use makaton which we are encouraging. We and Nyla’s team around her are working so hard to trying and get Nyla progressing physically but it is really tough going at times and we are exhausting every avenue we can to get the specialised equipment and people to help Nyla and her development.

I’m mentioning all of the above as we have decided to set up this go fund me page to help in Nyla’s quest to get her walking and do all we can to help our little lioness. We will always pay for and provide what we can, but as Nyla gets bigger and the equipment gets bigger and the funding isn’t as accessible, we are trying to find other ways. Me writing this has been a few months in the making as we have tried to do everything ourselves and take on the costs etc ourselves, but don’t want anything to delay Nyla getting what she needs to help her. It’s so important we try and get the help now and get Nyla what she needs asap.

Space is also a major issue with Nyla’s equipment so we need to look at options there, whether it be a storage unit, at home or on a dedicated storage site, we have tried going through local authorities but are struggling to get anywhere so this is another reason we are going down this route of a go fund me page.

Just some of the things we are currently looking into for Nyla is a specialised trike, hydrotherapy, swimming lessons in general to strengthen her lower body. Things like specialised shoes to accommodate Nyla’s feet and most importantly her splints. We are looking at other disability chairs along with adaptations to our garden to make it safer and a place Nyla can enjoy as the better weather arrives….the list is endless!

We have secured a wheelchair through the wheelchair services and we are thankful for all the help we have received so far but it doesn’t stop as Nyla grows and her needs change.

This all comes at a cost and unfortunately when it comes to equipment and accessories and all the above to help people with disabilities the cost goes up ten fold.

We will always try and do as much as we can ourselves and if that means daddy working more hours or increasing my work load, then that’s what I will do as Nyla is our No.1 and our focus now is to get her to where she needs to be physically and mentally.

It may look a hefty target to reach but rest assured we have meticulously added this up while also looking to the future with Nyla's needs.

I know we are in a cost of living crisis but every penny put towards helping Nyla achieve her goals will be greatly appreciated.

We want the best for Nyla and anyone who knows us and the journey we have been on as a family and continue to be on knows that is our No.1 aim to get Nyla where she needs to be and give her the opportunity to do so, but the only way we can do that is support, equipment and other means to ensure she has the best opportunity.

Nyla is such a happy little girl who brightens up anyone’s day. She is our heartbeat and the strength and courage she has show so far in her 3 and a half years is beyond words. She truly is our inspiration. ♥️

Thank you for taking the time to read.

The Woodmans