A grieving Highgate couple who lost their baby son to a rare brain tumour have raised more than £60,000 for a children’s cancer charity since his death 15 months ago.
Clair and Kez Alleebux held a Little Miracles Ball at the weekend in honour of their son Lucas who died of an Atypical Teratoid Rhabdoid (ATRT) tumour at seven weeks old.
The masquerade ball held at Chelsea Town Hall raised more than £20,000 for Children with Cancer (CwC), the charity the parents have supported since their son died in November 2015.
Clair said: “Lucas was born on September 21 and we thought everything was fine, we thought we had a healthy little boy, the pregnancy had been fine. We took him home, showed him off, settled him in, normal things parents do. Three weeks later we were changing him and we noticed when he was crying he wasn’t moving one side of his face. My husband said his face didn’t look right and we immediately got him dressed and took him to hospital.”
At the Whittington Hospital a paediatrician booked Lucas in for an MRI having never seen facial palsy in one so young and a tumour was found.
He was transferred to Great Ormond Street Hospital (GOSH) where tests were done and following a seven hour operation to get a biopsy Clair and Kez were given the devastating news of the terminal cancer.
TTurning down treatment after being told little could be done to save their son, the couple chose to take him home and care for him in his final weeks.
Clair added: “We took him home which was really hard as you know you’re taking your new born baby home to die.
“He was at home for three weeks. We discovered what was good for us. We took him to London Zoo which was a massive mistake. You’re surrounded by all these children and you’re reminded that your child isn’t going to grow up. So we took him to Kenwood and Waterlow Park, places that were quieter where we could go as a family and create memories.
“He deteriorated quite rapidly over the next few weeks becoming more and more unconscious. Every night you’d go to bed wondering if he’d make it through.
“He died in my arms on November 9. I didn’t cry, I wailed, the pain was indescribable.”
The couple launched a tribute page shortly afterwards as people contacted them asking how they could make a donation to his funeral.
They linked it to CwC which they’d see when they were visiting Lucas at GOSH and saw donations multiply.
The couple have raised vast amounts to raise awareness of children’s cancers.
A florist who made a posy for Lucas’ wicker coffin allowed Clair to make wreaths which she sold making £900 for CwC. Kez will be running the London marathon next month.
Then last year Clair discovered she was pregnant while making plans with netballing friends to host the charity ball.
In September she gave birth to Joel which prompted her and Kez to name their event Little Miracle “because children are so precious”.
She said: “We’re so proud of Lucas. If he can do something, if he can have a legacy and help other children and families, then that’s amazing. I don’t want his existence, what he went through, to be in vain. I also never wanted to get stuck in a dark place and let his death overshadow my life; I wanted to do something positive from it.”
To make a donation go to lucas.alleebux.muchloved.com
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