“When I met with other mums and saw other children, I knew my daughter was in some way different. Nobody else could see it but I could.”
In February, Heidi celebrated her 21st birthday, a day her parents never imagined would come. When she was 18-months-old, Heidi was diagnosed with Rett syndrome, a rare genetic disorder that affects brain development. The condition, which affects around one in 12,000 girls born each year, results in profound and multiple physical and communication disabilities.
For the last two years Rainbows has given Heidi and her family a new lease of life. Mum Tina said: “Rainbows has been fantastic. It is a break for Heidi and a break for me. Rainbows gives her time out and a chance to experience new things. She absolutely loves music therapy as well as complementary therapy.
“Heidi really loves going to the hospice and I didn’t realise how isolated we were until going to Rainbows. I attend the Parent/Carer group and the coffee mornings and it has opened up a whole new world for me. I feel very accepted at Rainbows and I have never had that before. We are both getting so much out of it. To be part of Rainbows is just amazing.”
After her daughter’s diagnosis Tina, gave up her career as a hairdresser to look after Heidi, spending nine hours a day just on her routine. Most of that time was taken up feeding her. They could never go out anywhere as it was too difficult.
Heidi, who will never be able to walk or talk, doesn’t sleep well at nights as she gets pains in her joints and is often sick. For the last five years, Tina has slept in her room.
When she was 19, Heidi got very poorly. She was in hospital with various conditions, including Sepsis and after three weeks, parents Tina and David were told there was no hope for their daughter. “We were told she wasn’t responding to anything and everything was shutting down,” said Tina. “Heidi had never been to Rainbows but I said if it came to it, I wanted her to go there to die. I wanted her to be in a homely situation where people could come and visit her and not be in a clinical environment.
“At that time, she stayed in hospital and I was just numb. I had given in and I accepted what the doctor told me. It was like I was in a dream. All of the family came to the hospital to say their goodbyes and it was though I was watching someone else in that situation. I kept thinking I was going to wake up.
“We did a memory box with handprints and some of her hair and filled it with photos to capture every memory.”
Then four days later, Heidi opened her eyes and very slowly smiled. She then began to steadily improve. “Things then became different for Heidi,” said Tina. “She can’t eat now but we think that is a good thing as she doesn’t have to struggle anymore. Plus, instead of it taking up our whole day, we can now go out and it has opened a whole new chapter for us.
“I never like to look ahead, I just take each day as it comes. One day she could be well and the next she is at death’s door. Heidi is my best friend. We spend all day together and do so much together, it does actually feel weird when she is at Rainbows. Heidi is an amazing, happy person and I wouldn’t have her any other way.”