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Luuk’s story

Luuk, 18, was born in the Netherlands to parents who were told that he was unlikely to survive a month and that if he did, He’d never walk or talk. Luuk was a Syndrome without a Name (SWAN) baby, born with an array of severely complex conditions. By the time Luuk was 10 weeks old he had undergone open heart surgery, was ventilated, tube fed and spent many weeks at a time in hospital.

At 18 months, Luuk moved with his Scottish mother and Dutch father over to Scotland where he became a regular in patient at the Sick Kids, now Edinburgh’s Royal Hospital for Children and Young People (RHSCYP) where Luuk has attended all his life with multiple emergency admittances before the age of six.

When Luuk was about 3 years old, mum Sharon was told by her Pre school education home visitor about Special Needs Information Point (SNIP), Kindred’s previous name, a service at the hospital where she could find support from advocates who had lived experience of caring for a child with complex needs. Sharon was keen to meet our service who over the last 15 years she says, “have been with me, every step of the way”.

Aged 3 and a half, Luuk underwent surgery in Birmingham to reposition his liver, which was located in his umbilical cord at birth, then moved to the front of his abdomen as surgeons were unable to put it in the rightful position due to a hernia, leaving Luuk very susceptible to critical life-threatening situation should he be injured. This has meant Luuk requires an emergency protocol in place at school.

Sharon met with advocate Linda who has remained the family’s advocate, giving Sharon emotional support and practical support at meetings. That support started with Luuk’s nursery education, Sharon felt his needs were not being met and Linda supported her to get the education for Luuk that was right for him, supporting Sharon through a number of instances around educational needs, placements, and complaint procedures over the years when they were necessary, e.g., implementing A Coordinated Support Plan (CSP)

Speaking of the importance of Luuks CSP and his emergency protocols being in place and followed after an incident where he was assaulted, Sharon said,

”I have to trust his carers at school. Every day I send Luuk to school, I pray that he will come back to me alive.”

Kindred have made an amazing difference to Luuk, he would not have the education he needed without them, hed be stuck in mainstream education instead of getting the specialist schooling he has. He would have felt like the odd one out at school. Id be lost without them. Kindred are amazing.

Linda has also provided a lot of emotional support to me over the years when things have been difficult. Knowing she is someone I can trust, who will have my back when it comes to having Luuks needs met is something money can’t buy. I think that’s important to me too.

Sharon was so impressed with Kindred that for 2 years she joined the board until there came a time when she could no longer give the time needed to the role.

Since that time Sharon has continued to rely on Linda for support for Luuk, who has 32 separate conditions, including being tube fed, having a liver condition, ADHD, Learning disabilities, respiratory and brain injury and sometimes is in a wheelchair.

Despite all of this Luuk is still in school and transitions later this year into college to continue his studies. Mum Sharon describes Luuk as “the kindest, gentlest young man who has been through very tough times.”