My beautiful son Tyler is 4 years old. He was born with a rare life limiting brain condition called Lissencephaly. His brain didn’t grow correctly and is missing most of the folds that a normal brain has, that stores information. This has also caused Tyler to have uncontrollable (refractory) Epilepsy, Microcephaly, Ocular Motor Apraxia in both eyes, Global developmental delay, moderate spinal scoliosis, mild hip dysplasia, along with being non mobile, non verbal and tube fed.

Tyler lives with constant epileptic activity in his brain. He has between 2-6 clusters of seizures in a 24 hour period; and in those clusters he has between 30-100 epileptic spasms. It takes it out of him every single time. He is due to have surgery at Addenbrookes hospital tomorrow (20/01/2020) to have a VNS device implanted in his chest and neck to hopefully stop or help slow down his seizures. No medication has worked for him, nor has the Keto diet, and because of his brain malformation and the fact he is non mobile, this means he isn’t a candidate for brain surgery. He’s completely dependent on me, his neurologists, doctors, therapists, his family, his carers, including those at his special needs school- where he loves going and thrives. In spite of all of his needs, Tyler is the sweetest, happiest, cheekiest, most loving little boy! He loves cuddles, and giving out kisses, he’s always giggling and has been copying me lots this year which is so exciting!

Due to tylers condition he is completely dependent on physiotherapy equipment; a standing frame, wheelchair, specialist highchair, specialist car seat, bath seat, changing bench, physio bench, amongst other things; and these items are pretty bulky and take up a lot of space in our little bungalow. The bigger he gets, the smaller our home gets and at 4 foot tall already we’re slightly cramped! It’s just me and Tyler at home, so the strain on my back is evident when I keep having to move everything out of the way to access whichever piece of equipment he needs.

We have such a huge garden that has just had a ramp installed- but unfortunately it’s not safe nor accessible for Tyler to enjoy yet. I’m looking to turn a corner of it into a safe sensory play area for Tyler to be able to sit outside and enjoy the warm weather with appropriate outdoor toys, and also install a large summer house at the back of the garden along with a safe path to get to it. I’d love to be able to set up his equipment ready for physio in the summerhouse, and set up a quiet safe space for him to be able to roll around and explore without bumping into things, with music and lights, all year round.

Due to the amount of work that needs doing, including levelling out the garden, laying down the summer house base, and all the materials and labour needed, it’s going to cost around a staggering £8k. EDIT; I originally planned for £5000, but after getting two quotes for the landscaping I have had to increase the amount needed to do this for him 😳

I really believe this will improve Tyler’s quality of life and I’m determined to keep the consequences of his condition at bay for as long as possible by helping him develop and learn and strengthen himself in the best way I possibly can!

If you have made it this far, thank you for reading my little boys story, and for anyone that is willing to help, THANK YOU from the bottom of my heart ❤️💜