Amy Cooper, from Hampshire, is 35 years old and has MPS I Hurler. She is one of the few people who underwent a Bone Marrow Transplant at an early age and survived this experimental procedure. She shares her story below of how she copes with living with MPS and receiving support from our Support and Advocacy Team.
Amy wanted to share her journey with MPS to make other parents and carers know that you must make sure you get the right help and support and to speak up. “You don’t get anything if you don’t speak up,” Amy says.
Diagnosis and treatment:
Amy was diagnosed with MPS I when she was six months old and underwent a Bone Marrow Transplant (BMT) procedure soon after her diagnosis in June 1987 at Westminster Children’s Hospital. Her older brother, Danny, was the donor for the procedure. Unfortunately, this didn’t take and so she had the second procedure a year later in 1988 in the Gomer Berry Ward at Westminster Children’s Hospital (what is currently Imperial College London).
Amy attended Great Ormond Street Hospital (GOSH) in London quite regularly as a child. It was easier for her and her parents as everything was done in one hospital, and they didn’t need to travel around the country for her appointments.
Receiving support from the MPS Society:
Sally, one of our Support and Advocacy Officers, has been Amy’s support officer for around four years. “Sally has been a life-saver. If it wasn’t for her, I wouldn’t have what I have now. She’s helped me with things like dealing with my bank and helping me to find a place to live when my mum died” Amy said.
Amy was previously living in a rented home with her mum and after her mum passed away a few years ago, it was found that Amy had become an illegal trespasser. Amy didn’t know what this meant, and she didn’t have anywhere to go, and Sally helped her to find somewhere suitable to live, as well as hold off any court orders. It was a very stressful time for her.
Amy now lives in a lovely flat near where used to live so she could stay with her current GP and be closer to her aunt. Also, she wanted to live somewhere that allowed animals so her cat, Casper, could live with her. Not too long after moving in, she discovered that she had been overpaying on the bedroom tax in her mum’s house as she was the only one living there until suitable housing was found, so Sally helped her to receive a rebate.
Once Amy received the money back, she spent it on a new fridge/freezer and a TV. Her Occupational Therapist recommended that on medical grounds, she should have vinyl flooring put down so she can easily get around and it was paid for by her local council.
How her MPS affects her:
As Amy has gotten older, she now suffers from osteoporosis, osteoarthritis and uses a wheelchair to get around due to her weak bones. Despite this, she still likes to be independent and enjoys trips out for shopping and lunch. As she is unable to take her medication herself, she has carers who come in a few times a day to administer her medication and help with her hygiene. Also, they deal with her social care three days a week. Amy’s carers are from Lilyfields Care in Farnborough, Hampshire and have been caring for her for two years.
Rachael Bolland, Amy’s BMT nurse, said: “I worked on the unit as a post-registration student nurse whilst undertaking my children’s nurse training. I admired the courage of the parents as they knew the treatment was experimental (only two other units in the world at the time were transplanting for inborn errors of metabolism) and on the consent form death was highlighted as an outcome. I stayed in touch with Amy after I left and have followed her progress as well as her challenges. It opened my eyes to the challenges families face.”
Dr Derralynn Hughes, Amy’s consultant at The Royal Free Hospital, said: “I have had the pleasure of caring for Amy since she transitioned from the paediatric service some years ago. Despite the challenges to her mobility which her condition brings she is always cheerful. She is knowledgeable about MPS and her transplant and is motivated to take the initiative in requesting and arranging elements of her health care and in linking up various professionals. I look forward to our future consultations for many years to come.”
She sees Dr Hughes every six months and if she can’t go there, especially due to the COVID restrictions, she will FaceTime her. Fortunately, she was fine throughout COVID and the lockdowns as she doesn’t require any other treatment.
Amy has been described by Dr Ashok Vellodi, one of the consultants who performed her BMT, as “one unique lady” and “a medical breakthrough” and we think so too!
If you would like to talk to someone about MPS or a related disease, please contact our Support and Advocacy team on 0345 389 9901 or email the team here.
If you would like to share your story with us, please contact the Communications team here.