Our little boy Teddy is a happy, playful 11 year old boy with a mischievous energy and a smile that could light up the room! He adores his family and his faithful hound, Percy. He is full of love and brings joy to all who know him.

Teddy was diagnosed with Kabuki Syndrome as a baby, which is a rare genetic syndrome causing a range of complex and life threatening health problems, as well as Autism and Learning Disabilities. He has spent much of his life in and out of hospital and manages high levels of chronic pain as a result of his condition. He also has to have weekly infusions at home in order to keep him well.

Teddy's mobility is variable, and whilst he can walk around the house on a good day, at times he is unable to due to severe pain. He also needs constant supervision and support on the stairs due to severe epilepsy and the risk of seizures.

Also, his condition has a huge impact on his sleep – he is often awake for hours overnight due to pain and seizures. As his bedroom is very close to his two siblings rooms' this means the whole family misses out on sleep.

Teddy enjoys many of the same activities as his siblings, such as playing outside with his mud kitchen and going on his trike. However, as his mobility has declined, he has lost the ability to navigate the steep uneven surfaces and steps in our garden. On days where he requires a wheelchair, we have no space either inside or outside to get him around.

We live in a typical (but small) family home, with a downstairs toilet, that does not have space for an extra adult to be in the room with him, meaning that if he needs to use the facilities, he either has do so with the door wide open or be carried upstairs.

We hope that our build will create a downstairs bedroom and wetroom for Teddy, which will be achieved through a small extension and converting the dining part of our kitchen into a wet room for him. However, in doing this we will lose space for a table – which is especially important for Teddy who is learning to eat orally. We hope to add a small conservatory to the back of the house to accommodate a dining table.

In addition to this, all doorways on the ground floor will be widened and we plan to install level access hard flooring throughout, so that Teddy can use his wheelchair when needed. We will also need landscaping works to the front and back of the property to allow him access to the outside spaces.

We are so lucky to be able to access a DFG grant of £30,000 plus a £20,000 top up grant from our local authority. Unfortunately, this is not able to meet the cost of our entire build and we are left with an estimated shortfall of around £40,000.

We are designing this build with Teddy’s future in mind, hoping that this will meet his needs as gets bigger. We would love for our gorgeous boy to be able to have a home that is not only accessible and safe for him, but a place where he can play and learn, as well as having dignity and independence. Due to the complexity of his health needs and his very rare condition, we can't know what the future may hold for him however, we hope that others will join us in our bid to help Teddy to continue to be as happy as he can be!