Joanne was diagnosed with MPS IVA Morquio when she was three years old and her mother Judith Evans, one of our lovely trustees opens up about what life has been like for her incredible daughter Joanne to live with MPS IVA Morquio.
At the time of writing, Joanne has just turned 36, and the intervening years have been a roller-coaster of emotions and experiences during which we have faced many challenges together. It has always been an enormous help to know that the wonderful team at the MPS Society was there with advice, reassurance and support, as we learned to cope with Joanne’s condition.
Joanne has always been very independent and determined and has never let her disability hold her back from anything. She certainly never allowed us to molly-coddle her.
Thirty years ago, life for a child with Morquio was very different – there was no prospect of enzyme replacement therapy; it was unusual for a disabled child to attend mainstream school and we really felt we were blazing the trail as new kids on the disability block. Since there was no treatment available, apart from routine appointments with her consultants, support from the MPS Society greatly enhanced life – a trip to Disneyworld, a party at Downing Street, a power chair from Whizzkidz, attending and speaking at conferences both at home and abroad.
Suffice to say that Joanne did attend mainstream school and went on to graduate with a degree from the University of Glasgow. As part of her degree course, she was required to spend a year living and working in France and in 2006 she decamped to Aix-en-Provence where she lived totally independently in very spartan student accommodation and worked as an English language assistant at a secondary modern school. After graduation and having applied for over 100 jobs and attended interviews the length and breadth of Britain, she finally secured a job in Oxford, where she settled.
In the year she left school, she took part in the Tall Ships Race aboard Tenacious and it was on that voyage that she first met her now-husband, Phil. Their relationship endured through long separations as they pursued their studies and careers, but eventually, Phil was able to move to Oxford where they bought their first home together and married in 2014. For several years, Joanne worked for Oxford University before leaving to set up her own online marketing business which she continues to run.
Learn more about what life is like living with MPS IVA Morquio by taking a look at our disease booklet.