Xander's Amazing Journey

Xander is now 2 years old.  At 7 month's old, he was diagnosed with six conditions, including a severe life-limiting brain malformation, complex childhood epilepsy and registered blind. Xander's mum, Vicky, talks about the diagnoses and the subsequent support and help that Xander has received: 

 "I said thank you, after receiving the diagnosis from the paediatrician, still numb from the fact that 95% of children with Xander's brain malformation do not make it to their 10th birthday.  He was forecast never to crawl, walk, talk, or achieve key child development milestones.

"I carried my son back to his hospital room, closed the door, drew the blind and we danced.  I told him I was going to help him, that our life may not be what we had expected but we were going to have a ball.  Truth be told, I didn't quite know how to help him.

"I spent months begging for some help with physio, realising during that time just how bad the proviision is for children with these disabilities.  In a 12 month period Xander only received 4 hours of physio with me desperately trying to find other ways to help him.

"I researched what else I could do and spoke to lots of other parents with similar diagnoses. The long term benefits of  Conductive Education repeatedly came up as an amazing, practical and confidence building early intervention service for young children with these disabilities. So  I contacted the Dame Vera Lynn Children's Charity and their Outreach Support Worker, the lovely Carol, came to visit us at home and gave some words of wisdom and from that point on,  our lives improved as Xander genuinely had the help that he needed.

"Xander has been attending weekly sessions at the Charity's Centre in Cuckfield since March 2018. He has benefited primarily from Conductive Education and Music Therapy sessions, in addition to being part of the first baby massage group class and initially attending swimming sessions.  Since attending music therapy, Xander's motivation to play instruments, particularly the xylophone, became very powerful.  Unfortunately he had to contend with multiple daily seizures throughout 2018, which repeatedly stole his ability to hold the xylophone stick. So, every week, he would re-learn how to play and had a brilliant time with Annabelle and Kylie along the way.

"Now his right-hand grip is pretty awesome and his left-hand is coming along too.  He has also started to open his hands, to feel and tinkle the bells, which is incredible after so many months of being touch-defensive, with closed, tightly clenched little hands, like many blind children.

"In his Conductive Education sessions he's encouraged to explore with his hands, using them to help him make sense of the world that he cannot see. He enjoys feeling items like leaves and twigs or finger-painting to encourage his sense of touch. Excitingly, he's also beginning to sit, by weight bearing on his arms with splints, which is a huge milestone and I'm so very proud of him.  This would never have happened without the expertise and support from Dame Vera Lynn Children's Charity.

"I cannot begin to thank the team at Dame Vera Lynn Children's Charity enough for their incredible help with my child's development and supporting me in a way I could not imageine.  Xander has come on leaps and bounds over the last year and we are now looking ahead to the next chapter in our lives."

Vicky Willis

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