At 12-weeks-old, Noreen's daughter Muskaan was diagnosed with a rare bone marrow disorder called HLH. The family were supported by CLIC Sargent Social Workers and given a CLIC Sargent grant.
When Noreen’s daughter Muskaan was 12-weeks-old she developed a high fever. After visiting her GP, then her local hospital in Bradford for tests, they were referred to Leeds General Infirmary Children’s Hospital, where they found out that Muskaan had a rare bone marrow disorder called hemophagocytic lymphohistiocytosis (HLH).
"I was completely shocked,” says Noreen.
“Our doctor said that just one in every 100,000 children will be diagnosed with HLH, and explained that it could be life-threatening.”
A big help
“Our CLIC Sargent Social Worker Lucy was a big help. When we were admitted she approached me on the ward and introduced herself. She said that she could help us however we needed. I said that I didn’t want any help. But she calmed me down and explained that treatment would be a long-term thing, and that some extra support could make it easier to cope with.
“The first thing she did was arrange a CLIC Sargent grant of £170 to help out with all the extra costs of travelling and eating at the hospital, which got really expensive.”
Muskaan was in hospital for six weeks, and then discharged on a weekly pattern of chemotherapy and steroids.
Eventually a match for the bone marrow transplant she needed was found. But after the transplant, her body rejected the cells and they started to attack her body.
A shoulder to cry on
Noreen said: “It was really terrible. She looked like she’d been in a fire with burns all over her body, and was in a lot of pain. It was really touch and go.
“Lucy was there for me when I was stressed out and upset, a shoulder to cry on.”
Muskaan was discharged after treatment for two days, but sadly she became extremely unwell again and had to return to hospital, where she remained in isolation for the next five months while she recovered.
“When she came home for good she was behind with her development as she’d been in hospital and in isolation for such a long time,” says Noreen.
In July 2014 Muskaan was diagnosed with significant sight loss in one eye, a side effect of the donor cells initially attacking her body.
Noreen says: “Another CLIC Sargent Social Worker Dalvir supported us, as Lucy was on maternity leave. He was brilliant too. He visited us at home and arranged for us to get disabled badges and things that would help us manage her disability.”
Muskaan started at special school in September 2014 and the intensive work the staff did with her made a massive difference. She is now at mainstream school.
“Every day I look at her and think how well she’s doing, and how proud I am of her. Muskaan did have a very traumatic time and had lots of set backs. But she came through a fighter, which made us stronger.”