Hello, I’m Victoria and this will be my first Christmas with the MPS Society. I’m part of the Support and Advocacy Team working with families across the UK affected by MPS III Sanfilippo, MPS II Hunter Disease and Gaucher Disease.
As a team, we deal with a multitude of issues and we understand what a difficult time it can be for an individual and their family members when they first receive a rare disease diagnosis. For some, this will be the first Christmas they spend having received a diagnosis, like one of our members who is seven years old. The diagnosis left the family shell-shocked and needing some form of direction. I was able to listen to their worries and needs, offer emotional support and give practical advice on issues such as buying a specialised mobility buggy. This led to me delivering an information talk to school staff about the condition to help them gain a better understanding of the disease symptoms and issues impacting the child.
We know that families face ongoing challenges as they navigate through life with a rare disease
I’m a qualified counsellor and have 7 years of experience working within bereavement services, supporting families through end-of-life care and post-bereavement. I’ve also worked as an advocate for children, young people and vulnerable adults under Local Authority care. All this helps me to better understand the needs of our members. We often deal with calls regarding loneliness as living with a rare disease can be very isolating, impacting people's mental health and making them feel detached from society.
I recently took a call from an adult living alone who wanted support with housing issues and finding employment. By reaching out they got the help they needed and now feel better about their situation. I am pleased I was able to guide them into the next chapter of their life. Unfortunately, this won’t be the last call we get like this.
We are here for our members as much or as little as they need us
Getting to know our families and building relationships is vitally important in our work, and it’s been great to have the opportunity to travel and meet families face to face, as well as talk over the phone or online. We know that families face ongoing challenges as they navigate through life with a rare disease. The work we get involved with is broad and I’ve supported people in areas such as benefit applications, health and social care, housing allocations and adaptations, to name a few. We often work collaboratively with professionals and parents to achieve a package of support and care that best meets the personal and educational needs of the child, young person or adult involved.
I’ve seen for myself the impact our ongoing support has given families and believe we make a difference to our members due to the strong relationships we build; championing and advocating for the very best possible outcomes and being a place of support and reassurance. We are here for our members as much or as little as they need us.
Our members often tell us that being part of a rare disease community is incredibly important to them as it provides an opportunity to build friendships, share information and experiences, and feel less alone. We are always looking at ways to support our members and we plan events where families can meet each other, create memories and have fun. With this in mind, I’m really looking forward to attending my first ‘MPS family Christmas day’ being held at Gulliver’s Land on Saturday 3rd December. I hope this is the first of many to come…!
We now have the chance to raise an incredible £25,000 so we can provide vital support to families when they need it the most.
All you need to do is make a donation between 12 midday on Tuesday 29 November and 12 midday on Tuesday 6 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 families we support.
Just visit www.mpssociety.org.uk/biggive between those dates to donate online.
