Kabuki UK Grant Programme

"A massive thank-you to the trustees and fundraisers of Kabuki UK for granting Esme her IPad and case. She has worked so hard during lockdown, but we were struggling with one of the original IPads which didn't allow a lot of the apps appropriate for her needs. She now has all her favourites uploaded and is absolutely thrilled. Esme has global delay, and at 13 years old, it is difficult to find different ways to help her retain basic number and reading skills. The IPad opens up a whole new area of learning which we can work on with her. I was initially apprehensive about applying for the grant as I envisaged a lengthy application document (and try to avoid adding more of those to the list!), but the whole process was straightforward, and Sally was brilliant about keeping us updated with the order. Thanks so much... You have made our daughter extremely happy and eager to learn."

Marcella's mum Helen says; "Feeling very grateful to you for getting Marcella this gorgeous bike! She absolutely loves it. She’s just learning the steering part and is getting used to pushing down on the pedals. The parent handle is perfect to have!!!! And I’m SO pleased we can pay it forward by using the money from her book to give back into the charity. Can't thank you enough x x x Helen and Marcella x x"

George's mum Kate says "Just a message to say thank you for the pram. It’s amazing! We enjoyed really putting it to the test yesterday. And George kept saying thank you, and signing thank you. We really feel he noticed the difference of being included and being able to experience the walk on a whole new level! It’s super comfy too with the inserts, and as you can see will last him many years so we can keep going on these walks and outings!"

Last week we were able to purchase some items for a young man who is moving into his own flat for the first time. We supplied a bed, bedding, a freezer and kitted out the kitchen with all the essentials. We have been looking for a way to extend the reach of the Grant Scheme and this request was the perfect fit. We were approached by the young man's support worker and we worked together to choose the items which Ricky needed. This is a big step in our aim to help people who have Kabuki Syndrome to live to the full. Ricky says; "I’m Ricky, I’m now 29. I have recently moved into my own flat in a supported living building. I had a few item which belong to the flat, but I needed things of my own. My support worker contacted Kabuki UK and they were able to help me with a grant. They got me some items I needed to help me to live independently in my own flat. I still need to decorate and will be doing this soon, to make it homely in my style. The grant has been a great help and a great start for my independent future. Kabuki UK helped me, I let them know what I needed and they got it for me. Thank you all so much especially Sally."

In 2015 the Snowdon family applied for a grant to buy a specialist car seat for their son Beau. He had outgrown his regular car seat and could easily let himself yout of the fastenings which was dangerous for Beau and for the other people in the car. We liaised with Beau's parents Tim & Nikita, they specified which car seat they felt would be best and contacted the supplier, JonCare (www.joncare.co.uk). We would like to thank Richard Bowes and his team at JonCare North for their help. Its great to see Beau enjoying his new seat, we are told that he can climb in and out of it himself and that the fastenings are so secure that he doesn't try to escape any more.

"Thank you so so much for our Kabuki UK grant, we finally get to go out and about on long walks in the fresh air as a family!!! Something as simple as this really is so appreciated as it gives us time to relax and spent quality time together. We usually have to go everywhere in the car or on Chantelle has to stay at home as she can't walk far xxx We really appreciate the help from Kabuki UK."

"Armaseena is really enjoying her pushchair! I would like to say a massive thank you to Kabuki U.K. Grant scheme. I applied for a grant for Armaseena and was successful, and now getting around is so much easier and more comfortable for her. The application process is straight forward and easy to apply. 😀 Thank you so much."

Antoni's Mum Kasia says "We would like to say big THANK YOU to Kabuki UK for making a bicycle ride possible for Antoni. Antoni, who is soon going to be 7 years old, has never been able to ride a bicycle. We tried balance bikes, stabilizers, cycling lessons, but it was all too much for him to handle. He lacks muscle strength and the ability focus to on a task to be able to control a bicycle. He always wanted to ride and was keen to try specialized ones at school. Together with physiotherapist, we decided it would be good for Antoni to have a trike for after school use. We did not realize how much more expensive the specialized trikes are compared to regular bicycles, so we asked Kabuki UK for help. They were tremendous with their responsiveness and assistance they provided. We applied for a grant which was approved and several weeks later, here we go … Antoni’s first bicycle ride! He had a choice of colour and gadgets. He proudly selected red and said that he will now be a postman delivering mail!"

Kai's Mum Carol said "We would like to thank the trustees and fundraisers of Kabuki UK for funding an iPad for Kai. Kai was recently diagnosed with the KDM6A Kabuki mutation and is on the severe end of the Kabuki scale. He has partial sight and is non-verbal. The iPad will really help with his partial sight and also help with his communication. He loves music and will enjoy the musical apps. Thanks again."

"Showing the delight on being able to ride to the park on her fabulous Rehatri trike which she received with the help from Kabuki UK grant scheme.... Thank you Karin & Wee V"

Here is Jadon using his new iPad. It was bought for him using the Kabuki UK Grant Scheme.