Meet Zeinab and her three children, A’idah, 19, Atifah, 21, and Ammaar, 13. As young people they are all very different, A’idah is lively and bubbly, her sister, Atifah, is shy and reserved while Ammaar is easy-going.
In 2010 Zeinab’s social worker suggested Noah’s Ark Children’s Hospice as a resource for the whole family but specifically for A’idah who was displaying serious symptoms and was subsequently diagnosed with DNA SEII gene deficiency. This type of gene deficiency is extremely rare with only ten other people in the world sharing the condition.
A’idah was one of the first 25 children that Noah’s Ark Children’s Hospice ever supported and in 2011 we also started supporting A’idah’s sister, Atifah, who had received a diagnosis of Rasmussen syndrome that resulted in severe epilepsy.
Zenab says:
‘I was so scared, especially when Atifah also became unwell, I knew I was going to need help and then I got pregnant with my son and Noah’s Ark started being more involved. They helped me with all sorts of things, transport for both of the girl’s medical appointments and they provided a volunteer, who would come and play with this kids and help me with things like gardening. Even after I had my son, Noah’s Ark still came about three times a week and I started to get more involved and from then on we never missed a family event.’
Zeinab goes onto say:
‘Noah’s Ark’s support means a lot to me and I want to give back by showing support and helping other families. It’s not a case of returning a favour more showing my appreciation. I was really struggling and Noah’s Ark helped me at the very time I needed it.’
Rebecca, Noah’s Ark’s Transition Co-ordinator, works with A’idah to be independent and navigate adult life. Rebecca accompanied A’idah to an appointment with a consultant specialist to discuss the possibility of a bone marrow transplant, this procedure is not without risk so Rebecca is helping A’idah weigh up the potential benefits and drawbacks of any decision. Rebecca has also helped get A’idah a Marie Curie nurse to ease the crossover into adult hospice care, when the time comes.
Zeinab says:
‘When Rebecca stepped in, I felt I could take a step back and my relationship with A’idah improved. A’idah has opened up a lot since we’ve known Rebecca.’
Initially Zeinab felt that Rebecca was only there for A’idah and she didn’t want to ask for ‘too much’ but Rebecca offered her assistance with complex processes like moving to Universal Credit and eventually Zeinab gratefully accepted the help. The help that Noah’s Ark has given Zeinab has given her the time and space to think about herself and what her future holds. She has attended college to study Health and Social Care and has achieved a Level 3 certificate, impressing her tutors so much they have offered her a job!
A’idah says of Noah’s Ark Children’s Hospice:
‘It’s provided me with care and encouragement and made me believe I can achieve my hopes and dreams. Rebecca has helped me with college, getting my car and transitioning into the adult world. They’ve shown me support, compassion and empathy.’
A’idah wanted to get into Health and Social Care, specifically working with children but it was decided that this was too risky as her immune system is too compromised. She now is looking to do a business qualification from home. Watch out world!