Joanne (MPS IV)
Joanne has MPS IVA, Morquio disease.
This photo is of our daughter Joanne taken as she did an assisted mast climb to first platform during her second voyage on the Jubilee Sailing Trust barque Tenacious, to the Caribbean and is a very good example of Joanne’s “can-do” attitude to life. Joanne was diagnosed with MPS IV Morquio when she was 3. She is now 26 and the intervening years have been a roller-coaster of emotions and experiences.
Over the years we have faced many challenges and it has always been an enormous help to know that the wonderful team at the MPS Society were always there with advice, reassurance and support, as we learned to cope with Joanne’s health problems.
Joanne has always been very independent and determined and has never let her disability hold her back from anything and certainly never allowed us to molly-coddle her.
Twenty 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 that we were blazing the trail as new kids on the disability block. Since there was no treatment available, apart from routine health checks with her consultants, support from the MPS Society greatly enhanced life – a trip to Disneyworld, a powerchair 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 study for a joint honours degree at Glasgow University from where she graduated in 2009. 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 having applied for over 100 jobs and attended interviews the length and breadth of the country, she finally landed a job in Oxford, so she was off again.
In the year she left school, she took part in the Tall Ships Race in America aboard Tenacious and it was on that voyage that she first met her boyfriend Phil. Their relationship has endured through long separations as they pursued their studies but two years ago Phil was able to join Joanne in Oxford where they both still work and are now looking forward to buying their first home together.