Eight-year-old Freya has a syndrome so rare that she has to sleep under a special lamp every night and her parents feel they have been robbed of their daughter.
Freya has Crigler Najjar Syndrome Type 1 – a severe, persistent jaundice. Her parents, Karin and Alex, have been told the condition is so rare, there are only around 350 cases in the world.
Almost from birth, Freya needed Phototherapy, exposure to ultraviolet light, for 24 hours a day. She spent her first few weeks in an incubator and Karin and Alex were unable to cuddle their baby.
“At first, everyone thought she had jaundice,” said Karin. “It was very worrying as there were lots of doctors and nurses and talk of a blood transfusion. Freya had two hospital admissions and spent several weeks in a special incubator in hospital.”
Freya was given a genetic test which revealed Crigler Najjar Syndrome Type 1 and we were told she may need a liver transplant. At her second hospital admission, it was also noticed that Freya had a very floppy head with no control at all, so she had more scans.
In another cruel blow to the family, the tests showed Freya had brain damage, which was caused by her syndrome. As a result, Freya was suffering from dystonia, which gives her very painful muscle spasms.
“As the weeks went by, Freya could come off the phototherapy for a few hours a day and I got to hold her properly,” said Karin. “That was amazing. Before that, I wasn’t able to cuddle her.
“Then she had a special blanket, which has a blue light, and I could pick her up while she was wrapped in that. It was wonderful.”
Freya had to sleep at hospital in an incubator every night. Karin said: “Freya and I would get there early evening. Then Alex would drop our two-year-old son, Dylan, off on his way to work and we would all leave mid-morning the next day. Then we would be back again that night. It was relentless.”
Eventually, Karin and Alex got Phototherapy lights for home, which Karin described as “incredible”.
In 2021, the family discovered our hospice.
“We went to Rainbows when her dystonia was out of control. She was in so much pain and medication wasn’t seeming to help her.
“At Rainbows, we were given different options for her pain and that made all the difference. For the first time I felt relaxed, knowing someone was with her on a one-to-one basis all of the time and we felt really listened to.
“We came to Rainbows as a whole family and we had a great time. We were able to go swimming in the Hydrotherapy Pool.
“Everything is adapted so my children can play together and do things that you don’t think about. Like they can play on park equipment as Freya’s wheelchair can fit on the roundabout or the swing. There are just so many fun things to do.
“Freya loves Rainbows and we get to spend more time with Dylan. Freya has also been able to stay on her own which has meant we can go on holiday with Dylan and both do activities with him.
“Rainbows has made such a difference to our family and to Freya. We have had a very difficult eight years. She has had good periods, but it comes and goes. But just knowing Rainbows is there is great and we know she is a great place. She loves it and gets really excited. Freya is very smiley, cheeky and has a great sense of humour. She wants to be where everything is happening and she doesn’t like to miss out. Everyone loves her so much.”
Rainbows has made such a difference to our family and to Freya. We have had a very difficult eight years. She has had good periods, but it comes and goes. But just knowing Rainbows is there is great and we know she is a great place.