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Rett UK

“Now Tilly can talk to us” Dee Cowburn from Leeds, explains how Rett UK has helped her family to communicate with their three-year-old daughter

The first birthday of a child is a milestone and when their younger daughter, Tilly, turned one in September 2017, Dee Cowburn and her partner, Rob, arranged a family gathering to celebrate.

Dee says, “I was excited to wake Tilly on her birthday as Rob and I had planned a lovely day for her and her older sister, Thea, then two and a half. But the Tilly I woke that day was a different child – gone was my smiley, happy little girl; in her place was a glum, withdrawn child.” Dee put the change in Tilly down to the stress of the previous weeks when she had started nursery and Rob had returned to work after being on paternity leave for four months. Over a four-week period, she’d had the MMR vaccine and contracted chickenpox. Dee recalls, “I noticed that she seemed withdrawn and she’d gone from trying to roll over and attempting to feed herself to being generally uninterested in everything.”

By October, Tilly had virtually stopped moving and began to rub her hands in a fretful manner. Dee and Rob decided that if she hadn’t started to crawl by the end of November, they would take her to see the health visitor. But in November Dee asked Tilly’s nursery carer how she was faring and was shocked to hear that Tilly was listless and hardly moved. “I rang the health visitor in a panic and she came the next day to do an urgent assessment. I found I couldn’t answer positively to any of her questions about Tilly’s development. She referred us to see a paediatrician and an appointment was scheduled for January 2018. Needless to say, it was a very worrying Christmas.

“Tilly deteriorated – she was no longer gripping with her hands and began to pull strange faces, roll her eyes and had stopped baby babbling.

We took Tilly to her appointment and the paediatrician told Rob and me that Tilly had
a neurological problem.”

The regression was a key factor in Tilly’s diagnosis and so blood was taken for genetic testing, and to test for Angelman and Rett syndrome. In March 2018, the paediatrician confirmed that Tilly had Rett syndrome. The hospital advised them to contact Rett UK for expert advice.

Tilly began to have trouble swallowing. She developed reflux and had to have a fluoroscopy (a scan to view the oesophagus after food and liquids are swallowed), which showed that food was hitting her vocal cords and causing the problem. Dee says, “We’ve been told that next time she has a bout of choking, she will have another fluoroscopy and a tube will be fitted to feed her.”

In June 2018, Tilly was assessed at nursery and an educational healthcare plan was put into place which meant that she could stay in mainstream nursery with the help of two key workers. An educational psychologist also assessed Tilly explains Dee, “and we were told that Tilly’s intellectual age was between two and four months old. The psychologist suggested augmentative communication and eye-gaze technology could help her develop.

I contacted a Rett UK family support manager for a special booklet with symbols for Tilly and me to work with. We went to a family communication day, set up by Rett UK, and met one of the charity’s specialist speech therapists, Callie Ward, who has been specially trained in eye-gaze technology. Callie let Tilly try it out and she took to it immediately. Within minutes, she was able to track pictures on the screen and navigate pages. Everyone was surprised as Tilly presented as being uninterested but it was clear that her brain was very active – it was so gratifying to see. When we got home, I told Tilly’s speech therapist about the eye-gaze experience and she explained there’s normally a six-month waiting list for it. She came along with Tilly’s key worker and me to a Snap + Core First course run by Tobii Dynavox, which makes eye-gaze symbol-supported software. It’s basically an iPad fitted with a series of lights and cameras that pick up light reflections from a user’s pupils to translate the movement of the eye into mouse cursor movement; no other body action is required. Tilly tried it again and they were impressed how quickly she was able to pick it up. Afterwards, we were thrilled to be given a loan device for six weeks to use at home and we sent her speech therapist a weekly video of progress.”

The use of the loan device and video evidence helped Dee and Rob build a case to apply for a device through the NHS, something they didn’t think Tilly would be eligible for. When the loan device had to be sent back, they rented a similar one from Sweden, which costs £250 for three months. “My daughter now has a voice,” explains Dee. “We connected and we understand each other – how can we take that away from her? Recently, I was sitting next to Tilly while Rob was feeding her. I asked her if she was hungry and she managed to reply that she was angry, sad, uncomfortable and ill. I checked her seat harness and it was a bit too tight; after I’d loosened it, she told me she was happy!

“Tilly’s locked into a body that doesn’t work but we’re adamant it will not define who she is; she’s still her own person. Rob and I are so grateful to Rett UK, it does so much to empower parents to believe in their children and help them find the strength to live their best life. Without the charity’s support and dedication, we wouldn’t be communicating so effectively with Tilly.”

Rett UK

TOTAL RAISED: £13,379

➸ Funds raised in The Candis Big Give will go towards recruiting and training six Regional Communication Champions to support parents and carers of children with Rett syndrome with the use of augmentative and alternative forms of communication (AAC). rettuk.org

Rett UK provides professional family-support services, activities and events at a local, regional and national level

The charity aims to educate health, social care and education professionals about Rett syndrome to enable quicker diagnosis and improved standards of care

Rett UK promotes, encourages and supports research into new therapies and treatments for Rett syndrome

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