We would like to raise raise money for a child-friendly brain scan  machine for Epilepsy using the latest 7T MRI technology in memory of my daughter Janai who suffered from Epilepsy. It’s a state-of-the-art 7T MRI scanner  to scan children aged 2-18.I would also like to raise awareness on Epilepsy. There are many families who have children who suffer from epilepsy.

Janai was a very unique and complex girl. She had various conditions, her main ones being; Epilepsy,Cerebral Palsy, Hearing Loss, SPDL1 and Leukodystrophy. Thus I created the Janai Five Special Needs Foundation which is very significant to Janai and I, as it’s a reflection of her conditions and age. Leukodystrophy is a rare life limited disease and SPDL1 is a very rare genetic condition. There is not a lot of information about SPDL1 as it is so rare. I would like to raise money in the future towards research in SPDL1 and Leukodystrophy as more knowledge and understanding is required in order to improve treatments and support to those who have been diagnosed.
I will be doing various fundraising events, donations, walking challenges and many more. I will be supporting and listening to other parents, by having a forum page set up on social media and I will be doing talks (schools, media etc) to raise awareness on all the conditions that Janai had, to help and support other families and other children and hopefully save a life. I would also like to do small activities for children and special needs children including parents. The activities include Makaton, sensory play and making sensory toys, all of which Janai loved. The money raised will go towards the 7T scanner and some towards Leukodystrophy at a future day.

Janai was an amazing, smart ,intelligent ,cheeky, smiley, funny, happy, special, brave little girl. Janai spent most of her life in and out of hospital from the time she was born. She was 9 weeks premature weighing 1.09 kg, Janai was in PICU for just about 2months. While Janai was in PICU, Janai made a friend with her incubator neighbour and they were best friends until Janai passed away. Even though Janai was having a lot of hospital visits she was always smiling. The only time Janai wouldn't smile was when you didn’t say her name how she expected you to say it and when she was seeing the doctors at the hospital, but I knew she loved to play games so when I’d say to her, "Jan Jan we’re going now say bye to the doctors", Janai would give the doctors a small smile or the biggest smile (depending how much she wanted to play that day)! For her family, friends and teachers she would give you the biggest smile. Her smile was so precious and said so much, that’s one of the ways she would communicate with you as she was non verbal. Janai has a face that when you see it she is unforgettable she had three dimples. When she smiled, she had a deep dimple on her right cheek and another dimple on her left cheek and just underneath that dimple on the left cheek when she yawned, a tiny dimple would show.
She was a fighter from the first day she was born until the very end. She is my inspiration, our hero and everything. If you visit Great Ormand Street Hospital Chapel, Great Ormand Street Hospital School or even inside the hospital and ask about Janai a lot of staff will know her, or of her. Most of them didn’t get to see Janai in person but knew of her.

The first year of Janai’s life she was diagnosed with Cerebral Palsy however instead of having Cerebral Palsy on either all the left side or all the right side, Janai's was unique as her affected hand was her right hand and her strong hand was her left hand. Even though Janai was only able to use her left hand she did things her own way. Janai never got frustrated when she was unable to do something, she would do it her own way and she loved it when we applauded her with claps, screams of joy and smiles when she achieved it, which made her do more things . Janai showed us that anything is possible and CAN'T is not in our vocabulary. I always tell people CAN'T is not a word it's unable or not ready yet, as Janai proved to me so many times that CAN'T is not a word. Her right foot was strong and her left foot was affected. Her hearing loss was also unique as she was able to hear in her left ear but not her right. That would only happen in small places where there was a lot of noise: for example her nursery and school.

Janai was a little sister, a huge Peppa Pig fan and also a Lewis Hamilton fan. Her football team is Man United and her favourite colour is red. She loved her music and loved to dance in her own special way, she was a much loved little girl by family, best friend, friends, teachers and everyone who knew her. She will be dearly missed. Forever Missed,Forever Remembered. For Janai Let's try and help raise money to help other children. Any donations will be much appreciated.

Thank you for your donations, support and just reading my story.

Chekisha

Mother of Janai