Laya

“Rainbows means I have a family and a home in the UK.” These are the words of Fareda, whose seven-year-old daughter is cared for by us.

Laya has a severe neurodisability due to a rare genetic condition called UFSP2 gene. She also has epilepsy and developmental delay, which means she has constant seizures.

“There are a lot of unanswered questions about Laya’s condition as it is extremely rare, with only 14 cases worldwide,” said Fereda. “It has been identified as it is a fairly new condition and still needs a lot of research.

“Another problem is that the Cerebellum in Laya’s brain is not developing as normal. It is actually getting smaller and there is nothing they can do to stop it.”

When Laya was born everything seemed to be fine but at four-months-old she started having seizures which were diagnosed as epilepsy. An MRI scan and a range of tests at six-months-old indicated that Laya had underlying Mitochondrial Disease, a very rare life limiting condition.

Fareda was also told that her daughter would never eat or drink orally and that eventually she would lose all capacity to talk, walk or would never have a normal development. “I was told to expect a very short life expectancy for Laya. This was extremely difficult for me to accept and caused me huge anxiety and worries.”

Against all odds, Laya improved after four months and she started eating and drinking. Her communication skills also improved and there was an increase in her development.

Fareda is a single parent and relies on the support of our charity.

Fareda added: “I have no family in England and have been on my own for six years, Rainbows has been like a second home to me. Rainbows is like my family. I have no one I can rely on as it is specialised care. But with Rainbows, I feel like everyone knows what to do. I cannot leave Laya anywhere else and go for a break for a few hours, other than at Rainbows as I know she is in really good hands. And she is safe.

“We have been coming to Rainbows since Laya was six-months-old. It is just amazing. It is a great place for relaxation and has great facilities. I get a much needed break that we all need. I wish I could pay back or do something to say thank you.

“Laya continues to teach me about life and together we face new challenges. She reminds me to find the beauty in everything and to be strong and brave, just as she is. She reminds me to smile because life has been tough, she reminds me to always see the light, as she’s such a bright shining star. I am so blessed to be her mother.

“She is my greatest blessing. Without her, I wouldn’t be as strong as I am today. Laya has taught me to respect and appreciate all the little things in life and not to worry. Struggles lead to great victory.”