Occupational Therapy student fundraising to find a cure for daughter’s one in a million brain disease

First year Occupational Therapy student Kerry Cooke has the greatest inspiration to succeed with her studies; her daughter Heidi. Heidi is a happy nine-year-old who enjoys Disney, stories and school, but she is just one of 100 people in the world with an exceptionally rare genetic condition known as BPAN (beta-propeller protein assisted neurodegeneration).

BPAN is a degenerative brain condition similar to Parkinson’s disease; the condition is fatal to most by middle age as there is no cure. Kerry was inspired to study Occupational Therapy at the University of Northampton to ensure she is able to provide the best possible care for her daughter.

Kerry, aged 38 from Leicester, explained: “I originally came into Occupational Therapy because Heidi was delayed developmentally, but upon diagnosis late last year it became clear that she isn’t delayed, she’s declining. There is little research taking place around BPAN, and I am fundraising to fund further research into her condition.”

“In layman’s terms, BPAN is a messed-up form of dementia. Heidi is nonverbal, she is doubly-incontinent so we’re changing pads, she is low-mobility – which means she does use a wheelchair outside of the home – she can walk and she does walk (she can walk quite fast when she wants to). She has got severe learning disabilities – she doesn’t read or write.

“Heidi’s cognition will decline; she may likely lose her sight suffer painful muscle seizures among other symptoms. She can be treated with Parkinson’s meds, but the medication also causes hard earned loss of development.

Six years after BPAN was first identified, medical researchers are working to find a cure. A genetic counsellor from Oregon Health and Science University, Dr Alison Gregory, helped with the findings. Dr Gregory explained: “BPAN is very complicated which is why it was so hard for us to find the gene that causes it. Symptoms that the gene change causes are early developmental delay – especially with language and many of these kids have with their motor skills.

“I hope there will be a cure in the future – that’s the goal of the very small community of us who are working on understanding and researching this disorder. We’re at the beginning of that process as we just found this gene a few years ago.

“Funding is a huge issue. There isn’t enough money for all of these rare disorders. So for us, our research would go faster if we had more money. Money speeds everything up.”

Heidi’s mum Kerry is now well into her first year of studies at the University of Northampton, and is working hard to care for her daughter, study and attend placements, while raising awareness and funds for BPAN research.

She explained: “I am working to raise £1,000 to fund research into BPAN. My fellow students recently took part in a #mannequinchallenge to help spread the word, and the University has donated some BPAN awareness wristbands, which are on sale for £1. There will be some activities planned to commemorate Rare Illness Day on February 27 – follow the Heidi’s World Facebook page for more information about the wristbands and other events.

“We take every day as it comes,” explained Kerry. “But no matter what, she’s still Heidi.”

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To find out more about Kerry and Heidi’s journey, click Kerry and Hedi’s Fundraising Journey to view a video by journalism student Bruna Tomsic.