Meet Riffat and her son Saad, aged 11
Riffat also had a daughter, Zoha, who sadly died in 2020, aged 22. Saad shares the same condition as his older sister Zoha called osteopetrosis. This rare genetic condition is also known as marble bone disease and causes bones to become very dense and brittle.
Zoha defied all the odds by living until she was 22, the average life expectancy of those with osteopetrosis is seven to nine years old. She was registered blind, a wheelchair user and non-verbal with a tracheostomy but had her own way of communicating. Riffat says:
“She couldn’t talk but she had her own beautiful way with sounds.”
Zoha had a very loveable cheeky personality, her mum adds:
“She was a proper madam. She wanted everything exactly how she wanted it.”
The family first came to Noah’s Ark Children’s Hospice in 2008 when Zoha was referred. While at Noah’s Ark Zoha made friends with another child called Ben, who attended the same educational settings as Zoha, who also sadly died in 2014. When Zoha died in 2022, Riffat added an ornamental butterfly to our Butterfly Woodland Walk in her daughter’s memory and placed it next to Ben’s. Riffat adds:
“When I put Zoha’s butterfly in the ground, two white butterflies came from somewhere and they just fluttered up and away. It was such a surreal and beautiful moment. Because of Covid, my family couldn’t come to Zoha’s funeral, so this was our proper goodbye. It was very precious.”
Saad is a very different character to his older sister, he loves music, listening to conversations and observing people. Saad was born in June 2013 and diagnosed with the same genetic condition as his sister which resulted in mobility, cognitive and communication issues, visual impairment and regular seizures. A full bone marrow transplant was quickly suggested and by the end of July they were in Great Ormond Street Hospital as a match had been found for him in just seven days. His donor was from the U.S. and was a miraculous 100% perfect match. The bone marrow was transported by plane and Riffat was given the opportunity to turn the machine on to start the transplant.
Saad stayed in hospital until March 2014 when he was referred to us at Noah’s Ark. Saad loves coming to the Ark, he enjoys the hydro-therapy pool, music therapy, the sensory room and his recent visit to Santa’s Grotto was a big hit.
Riffat was struggling in the last year of Zoha’s life. She says:
“I stopped talking to people and became isolated. I wouldn’t answer the phone. All people around me understood but some got upset.”
Luckily our Family Link Worker, Jo, was on hand to encourage Riffat to get back to The Ark, join in activities and start meeting people again.
Devastatingly, in 2023, Riffat was dealt another blow – a cancer diagnosis. She was treated with radiotherapy, chemotherapy and hormone treatments and is currently in remission. She was worried about Saad’s future if the worst happened and says:
“He has been with me throughout my cancer journey, a wonderful, most wonderful boy.”
Riffat was exhausted from the chemotherapy and still grieving for her daughter. She left all her family back in Pakistan when she moved to the UK in 2001 to access better health care for Zoha and to continue her teaching and academic career by attaining an honours degree.
“Noah’s Ark really helped during my cancer treatment, after my chemotherapy session on Fridays we’d come. Saad would be looked after, and I could have my own space, rest and peace. Noah’s Ark staff would bring a trolley to my car and carry our bags, it was such a big thing for me at that point, those little gestures. They made my most difficult moments when I was down health-wise, head-wise, comfortable for me.”
Riffat and Saad now access a spectrum of services at Noah’s Ark. Saad has sessions in the hydrotherapy pool, respite breaks both at The Ark and in our holiday lodge in Mersea Island where they spent Christmas. Saad has also received music therapy and has a specialist carer and a home support volunteer. Riffat says of the support she has received from Noah’s Ark:
“They make sure that I am not lonely or alone and that I am not depressed. We are very lucky to have Noah’s Ark.”
Riffat explains what Noah’s Ark means to her:
“I think the first thing I feel is refuge because I don’t have family here, but I know we can go there, we can do our things in our own way so it’s another home for me. There is no where we can go, it’s either at home or at Noah’s Ark. There’s no in-between. If I am going and staying with friends, yes, they will cook for me, look after me and be nice company but Saad’s needs must be met too.”
Riffat also enjoys the parent groups that she attends:
“When we are sitting there, we are all people in the same boat, fighting similar battles on daily basis, combating same challenges and we can talk and make fun of our situation. Laughing makes things easier.”
Riffat’s Muslim faith is very important to her and a big part of her life:
“The people at Noah’s Ark are part of my prayers. In my religion, we believe that prayer is the best and most sincere gift you can have from someone or can give to anyone. It’s something which comes directly from your heart. It could have gone either way for me, some people do not survive cancer, but I felt like I had a pillow to rest my head on and that was my friends and Noah’s Ark.”
Riffat also regularly uses our multi-faith room for prayers or just for some solace. She adds:
“The multi-faith room is a wonderful place because I am not in contact with anyone and there are books of all religions. Sometimes I go and I open other religions’ books just out of curiosity and the opportunity is very good. I feel peace when I go into that room. Sometimes I pray and talk to my God, sometimes I cry and sometimes I’m happy and grateful to my Lord for all the blessings and challenges of life.”
A big thank you to Riffat for allowing us to share their family story.