Angela is an MPS III mum and joined the MPS Society over 30 years ago. Throughout this time, the family attended many community events, including family get-togethers, holidays, conferences and, since the loss of her their David, the annual Weekend of Remembrance and Hope.
Angela's story shines a light on the lasting friendships and strong support networks created through finding a place of acceptance and empathy.
I became a member of the MPS Society on 14 October 1991. I rang them after we received the devastating news that our eldest son David had just been diagnosed with MPS III. Learning that your son has an illness that is going to rob him of everything from speech to his ability to walk, alongside extraordinary anti-social behaviour associated with MPS III and then, after all that, it would take his life probably before he reached adulthood, was devastating.
I feared that nothing could ever be normal again. However, the MPS Society introduced me to some wonderful people in very similar situations.
They had a few families more local to us than the head office in Buckinghamshire, known as 'area families'. They organised get-togethers for people affected by MPS. These were things like a barbeque in their garden, a visit to a farm or a Christmas party.
I suppose to the people on the outside we were a queer looking bunch with some very strange behaviours, but the support gained from those meetings was invaluable to us. Together, we learned to laugh again, became friends, shared information and gave each other hints and tips on how to cope with the different issues that MPS could bring.
If we didn’t have the answer, we would ring the head office and someone would always be able to help or put us in touch with someone who could help.
The MPS Society held annual conferences that were brimming with specialists from top paediatricians, and neurologists to scientists, nurses and carers, never forgetting members with MPS and affected families who shared their experiences and the difficulties families faced living with this cruel illness.
It always had a patient-centred approach.
While we attended the conference, the Society provided many volunteers to look after the children, taking them to wonderful excursions such as theme parks or bowling. The volunteers also sat with the children at night, so mum and dad could have an evening off.
Each year, for several years, we set off to Primrose Valley in Yorkshire for a week’s holiday with other MPS families. Together we would take over adjoining chalets. It wasn’t unusual for a parent to shout for support as one of the children escaped but we could quickly be there to help catch them. Though believe me when I say that trying to keep an MPS II or III child safe is nigh on impossible.
However, we all just pitched in and were made to feel normal, not inadequate!
As the condition progressed and our son moved into the quieter phase of his life we faced new struggles, for example, what type of care should be provided in school, what type of buggy he required if it didn’t fit into the usual budget, or even if we were entitled to home care. All these questions were always a source of anxiety to us, but a phone call to Christine Lavery would help us to find the right path. If we came to a dead end, she would hop onto a train and come and help us out personally.
Nowadays, life has changed beyond all recognition. Our son’s fight with MPS III is long over and all we have are memories. Nonetheless, the MPS society is still there for us.
Each year, along with other parents who have lost a child to MPS, we attend a memorial weekend at Thoresby Hall in Nottinghamshire. This is a chance to celebrate our beautiful children.
Only a short distance from there, we visit the Wood of Remembrance and Hope where each tree is planted in memory of a child or young adult who died from MPS. It is a beautiful, tranquil place where we can reflect on the lives lost and a chance to grieve without explanation. Each child with a tree planted is named on beautiful boards for all visitors to the wood to see so that they can live on in memories of strangers.
I have made many friends through the MPS Society, some are just in contact with Christmas cards, some by email and some we visit often.
Having a diagnosis of MPS seems like the end of the world, but with the MPS Society to help navigate our way through the trials and tribulations it brings, it is possible to live a somewhat normal, although slightly different life to the one we imagined.
This Christmas help to build a community for people living with MPS, Fabry and related conditions. We want to raise £24,000 to fund bespoke events so that parents like Angela can find support, understanding and strength among people in similar circumstances.
All you need to do is make a donation between 12 midday on Tuesday 28 November and 12 midday on Tuesday 5 December. During this time donations will be matched pound-for-pound at no extra cost to you meaning your donation will be worth twice as much to us and the people we support.
Just visit www.mpssociety.org.uk/biggive between those dates to donate online.
