27 January 2026
Meet Lucy and Mohamed
The couple have three children, Maya, aged 14, Leela, aged ten and Jenna, aged three. In 2016, Leela was diagnosed with a mutation in the DYNC1H1 gene causing SMA-LED (Spinal Muscular Atrophy with Lower Extremity Predominance) and then in 2017 a separate neurological condition, which means that she is non-mobile and non-speaking.
The family tried to cope alone until they found Noah’s Ark Children’s Hospice in September 2024.
Lucy's Pregnancy
Lucy explains: "I was 20 weeks pregnant when we went for our anomaly scan. We always knew there would be a chance of any children we had being born with cleft lip and palate because my husband was born with that, but we found that our baby had bilateral talipes in her feet and they couldn’t see her heart properly. We were rushed to University College London Hospital (UCLH) for another scan and a second opinion, and they confirmed she had bilateral talipes, and that her heart wasn’t pumping as efficiently as it should be. Her umbilical cord only had one vein and one artery when it should have had two arteries and one vein. They said with all their findings, there was a chance that she could have a genetic condition. We were offered an amniocentesis, and we said no because it wouldn’t change the outcome. If she's born with something, she's born with something. They also brought up terminating the pregnancy but that wasn’t an option for us."
Lucy adds: "Leela arrived early at just under 36 weeks and she wasn't breathing, so she was rushed off to the special care unit. It was such a traumatic birth, and she came so quickly that my husband missed it by two minutes."
Baby Leela
Lucy goes on to talk about the physical differences that Leela presented at birth, she says: "The lower half of her body from her hips downward were bent upwards and so were her feet. Leela stayed in special care for a couple of weeks as she had issues with her feeding but that resolved itself and she started gaining weight. For the first year of her life, we were in and out of the hospital, three or four times a week. They were doing all sorts of tests, but they don’t know what they’re testing for. Then, at around six months, we realised Leela wasn’t meeting her milestones. She wasn’t smiling or grasping, and the lower half of her body didn't work properly."
Leela's Diagnosis
The next stage on the road to Leela’s diagnosis came when she was a year old, Lucy says: "They found that Leela has a malformation in the DYNC1H1 gene causing SMA-LED (Spinal Muscular Atrophy with Lower Extremity Predominance). Leela then had an MRI to check her brain function and that was one of the hardest appointments we had. We were stuck in traffic when we took the call from Great Ormond Street Hospital (GOSH) with the news that Leela also had a brainstem malformation. This means she will never feed herself or grasp hold of things and will basically stay a baby no matter how much her body grows. That was really difficult to hear because we’re not going to be around forever, so that’s quite scary."
Leela also has additional challenges such as epilepsy as a result of her neurological condition and scoliosis. Lucy says: "Her diagnosis unravelled over ten years. At first the consultants just wanted to wait and see what she could and couldn't do but she proved a bit of a puzzle for them, so much so that they published a research article on her for students as her condition is so rare."
The type of SMA that Leela has is incredibly rare with only 30 cases recorded worldwide (at the time of Leela’s diagnosis). Lucy explains: "The majority of the people with Leela’s condition can still walk, talk, and live normal lives, but Leela is at the very severe end of the spectrum. She can sit up on her own for about five to ten minutes, and cognitively she’s about the same as a two-and-a-half-year-old, but sometimes she'll go back to a nine-month-old or a six-month-old where she forgets how to chew and swallow."
Lucy goes on to talk about Leela’s epilepsy and says: "When she has a seizure, her whole attitude totally changes so you don't know what version of Leela you're going to get. The epilepsy is a real worry as you hear about so many people passing away because of their fit, but Leela’s are pretty well controlled.’
Mohamed adds: ‘The consultant’s main worry was that as she gets older and grows the seizures will change and become more difficult to manage. But so far, she's doing well on the medication that she's on, but it hasn't stopped the seizures completely."
A Referral to Noah's Ark
Lucy talks about the positive impact that Noah’s Ark Children’s Hospice has had on the family, she says: "It was 2024, in the summer holidays and we were having a really tough time with Leela. We always thought we didn’t need any help, and we could do it all ourselves. I think it was a pride thing." Mohamed adds: "Also, I think it was more a case that we know Leela better than anyone else."
Lucy continues: "During that period it got to the stage where I was crying all the time. My mum had recently passed away, and I stopped going out the house. I didn’t know where to turn. We were then referred by Continuing Care in Watford to Noah’s Ark and introduced to Maria (the family’s Family Link Worker) and it has made such a difference to our lives. Being part of Noah’s Ark gave me a reason to get out of the house as all the amazing events were just too good an opportunity to miss. And it’s not just the kids who benefit, Noah’s Ark focus on us as a whole family. Maria is always messaging us to check if we’re OK or if we need anything, we have family members that don’t even do that, and it makes a massive difference."
Lucy goes on to talk about coming to The Ark, she says: "When we came to the Sensory Light Show event last year, it was so great because usually when Leela is screaming and shouting, people stare. When you’re at The Ark, nobody looks at you, nobody cares, because you're all in the same situation."
Mohamed agrees and says:
"You don’t feel like the odd one out, The Ark is a place of belonging. There’s no judgement and that's the best thing about it, it feels like a family."
Lucy struggled after losing her mum, who was a constant source of support, she says: "My mum worked with disabled adults for over thirty years and also had a disabled brother. So, she wasn't just practical support, she was emotional support as well. If I was having a bad day, I would call her and she would come over and just be there. For me to lose that support was horrific, which is why I think in 2024, I felt like I actually needed to take the help that was offered. My mum was 68 and fighting the cancer she’s had for eleven years and when she died, we lost our respite care and a lot of our support. My dad does try to help, and he’ll come over with Leela’s favourite toys but he’s not getting any younger, he's almost 70 and still grieving for his wife and his mum that we lost in 2024."
Sibling Support
Leela’s older sister Maya attends Noah’s Ark groups that cater to the specialised needs of siblings of children who are seriously unwell and the specific challenges they face.
Lucy says: "Maya was four when Leela was born and she always knew that Leela would be born with poorly feet. It has been tough for Maya because her childhood was sort of ripped away from her. My mum would take her out to do things, so she had that bit of normality, but our household wasn't normal anymore. Maya takes everything in her stride, but it has taken a toll on her. She learned from a very young age, our address, our telephone number and what to do if we need an ambulance, that’s just how she’s grown up."
Mohamed says: "It’s moulded her as a person, she’s very caring and loving and she’s a perfect big sister. She does have extra responsibilities, and it’s made her a lot more grown up and mature for her age but she’s also confident and outgoing."
Mohamed goes on to say:
"The siblings’ groups and events have been great for Maya. She's got that spark back in her eyes and a smile on her face. It’s just given her an identity, and she feels like she's seen and heard."
The groups are especially valuable for Maya during school holidays, Lucy says: "The six-week holidays are usually really tough for Maya, but she had amazing time last summer. She did loads of stuff with Noah’s Ark including a weekend away, so she wasn't just stuck at home like she usually is and when she went back to school, she had things to talk about. It’s really good for her to be around other kids and make friends."
The family are also noticing that little sister Jenna is mimicking Maya and helping with Leela, Lucy says: "Jenna's only four, but she will give Leela her bottle or her toys and considers herself her big sister not her little sister."
Tine to Enjoy the Small Things in Life
Noah’s Ark provides the family with a Specialist Carer who helps Lucy and Mohamed find time to spend together as a couple, Lucy says: "We’ve recently been out to a coffee shop, which we haven’t done for ten years. You forget what normal life is like when you have a child like Leela, everything is structure and routine. It's been so nice to just have a little bit of normality back." Mohamed adds: "Going for a coffee seems like such a small thing but for us it was massive."
Being part of Noah’s Ark has helped Lucy leave the house more confidently, something she has struggled with since her mum passed away. The opportunities provided by Noah’s Ark have enabled Lucy to attend our Family Events, enjoy time with Mohamed, and even take a family holiday at one of our Holiday Lodges on Mersea Island. All these experiences have had a positive impact on Lucy’s exposure therapy.
Giving Back to Noah's Ark
Lucy also recently took part in Step-tember, a challenge to walk or run 90 miles, as part of our 2025 From That Moment fundraising appeal. Lucy says: "At the point of the Step-tember challenge, I was still struggling to leave the house on my own, so I did a lot of it on the treadmill at home, but we would also go for walks at the weekend. I felt like I wanted to give something back and raise awareness and funds so that more families like us can experience Noah’s Ark. It’s something really close to our hearts."
Leela is now 10 and according to her parents is the boss of the house. Mohamed says: "Leela is a fireball and she’s very much in charge. She’s a determined, strong character, considering everything she's been through, and she has proved the doctors wrong. They said she wouldn't sit or move but she’s very mobile and makes decisions for herself. Leela is literally our glue, yes it hasn’t all been rainbows, but would we change anything? I don’t think we would."
The Impact of Noah's Ark
Mohamed reflects on the impact that Noah’s Ark have had on the family and says:
"The Ark has been a godsend for us, a place where strangers really have become family."
We welcome the recent media attention on Spinal Muscular Atrophy and are grateful and privileged to be able to share Leela’s story. With kind thanks to Lucy, Mohammed, Maya, Leela and Jenna.
