"Mo can talk to Courtney about things he doesn’t feel he can say to us.”

10 April 2019

Nine-year-old Kaddeisha and her brother Mo, 11, have a special sibling bond that would make any parent beam with pride, and for their mum Laura, this couldn’t be more true. “Mo adores his sister and plays so nicely with her,” she said, “especially when he thinks no-one is looking.”

What makes the Sarr family unique is that Kaddeisha wasn’t expected to survive birth, and has defied all odds to be here. “We first knew something was wrong during my pregnancy with Kaddeisha when multiple problems were found at my 20-week scan. We were advised to consider a termination at this stage as doctors told us our baby’s complications ‘were not compatible with life’", Laura recalled. "I told them I wanted to say hello before I said goodbye.”

Laura and husband Dawda had prepared themselves to welcome baby Kaddeisha knowing that they would have to face losing her so soon. “I remember the note the midwife had made on my paperwork: ‘If born alive, Baby Sarr will live for a maximum of one hour’. After her birth, we were left alone with her and were told to call for a nurse when she died. I kept passing her around to family members because I didn’t want her to die in my arms. An hour passed, then another. She was still with us.”

Kaddeisha continued to thrive, though doctors were unable to provide a clear diagnosis. Her chromosome abnormalities are unique, with no-one in Europe or the USA like her. After two weeks of checks and testing at different hospitals, her family were able to take Kaddeisha home to Maidstone – on her due date. It was the one thing Laura hadn’t prepared for: “I’d sold all the baby stuff I’d bought, and I’d only gone into hospital with one nappy.”

The Sarr family were first introduced to Demelza around the time that Kaddeisha had her tracheostomy fitted after spending the first two years of her life in and out of intensive care. “It changed her life,” Laura explained, “She was struggling before; working hard, sweating. I didn’t want her to have the tracheostomy at first but once I saw the difference it made to Kaddeisha I wished I’d done it sooner. We could live as a normal family, we could go on holiday. We went to Africa to see her family.”

Though Kaddeisha’s paediatrician had recommended that the Sarr family get in touch with Demelza to help with respite care, Laura and Dawda didn’t feel they needed those services as they were managing fairly well as a family. “I love being Kaddeisha’s mum, and looking after her. She’s always such a happy little girl and every day with her is a blessing. She and her dad are so close, she’s his little angel.”

It is actually Mo, Kaddeisha’s brother, who now benefits from the charity’s unique services after the family learned more about Demelza’s Family Support services at a picnic event for families. After attending his first Siblings Group at Sittingbourne, Mo returned home saying, “Mum, they’re just like me!”

Many siblings of children with complex needs may not often have the opportunity to go out and have fun with activities like laser tag or visiting an escape room, because their brother or sister can’t come along. Mo has relished the chance to have fun and socialise, telling us; “I love going to Siblings Group because I can make friends with people who know me more than others do. I can be myself.”

Mo also receives more one-to-one help in the form of Family Support Worker, Courtney. Mo recently started secondary school and Courtney is helping the school to understand his situation and that, with a sister as unique as Kaddeisha, he needs extra support. “Family Support is a bridge between home and school," explained Courtney, "I’ll check in with the family from time to time and we’ll have catch ups to make sure things are okay and to see if they need help with anything.”

Laura described how this benefits everyone, not just Mo: “Having that extra support takes some of the pressure off of us as a family. It’s just nice to know that someone is fighting your corner with you,” Dawda agreed: “For Mo to have someone he can trust outside the family with what he's going through is good for him. He doesn’t want to tell us when he’s sad because he doesn’t want to upset us. With Courtney he can stretch his heart out the way he wants to speak; he can talk to her about things he doesn’t feel he can say to us.”

With thanks to the Sarr family.