Donegal Woman talks to Sharon Thompson, who co-founded The Victoria Thompson Memorial fund and Scholarship in honour of her baby Victoria.
Sharon and Brian Thompson’s baby girl Victoria has been a powerful force for good. Victoria passed away after just nine months in the world, but her lasting memory has been an inspiring force for her parents and their Donegal community of Moville.
At five months of age baby Victoria was diagnosed with a rare, painful and terminal condition and was cared for by her parents and LauraLynn in her final months of life. She passed away in 2012.
Victoria’s memory has had a magical impact, according to her mother Sharon. “I always say there is a magic in the synchronicity of things after Victoria died,” she told Donegal Woman.
“Whenever she passed away the whole community rallied around and did fundraising. Different things that have happened along the way have been very special. I always said that ‘If Victoria wants it to happen, it will happen’. One little thing always leads to another.”
The communities of Moville, Greencastle and Sligo (Sharon’s home) worked together on various events to raise money for Ireland’s Children’s Hospice LauraLynn in memory of Victoria. They have raised more than €200,000 to date.
Now, Sharon and Brian Thompson have set their focus improving children’s palliative care in local areas. The majority of children with life-limiting illnesses are cared for in their homes and have to rely on nurses who are specialised in palliative care. They are few and far between in rural Ireland.
Sharon and Brian were left on their own to find a nurse in Donegal after Victoria became ill. Victoria was diagnosed with rare leukodystrophy and required constant care to manage her pain.
Her parents were fortunate to have LauraLynn house, but many children can no longer stay there on a long-term basis. In recent years eight outreach nurses have been appointed to work throughout Ireland. After years of campaigning finally one outreach children’s palliative care nurse will be based in Donegal.
“Until you are in the situation you realise there is nothing, and I mean nothing,” Sharon said. “The nurses we had along the journey were amazing. We couldn’t have done it without them. I would have encouraged any nurse I knew to train in children’s palliative care.”
Victoria Thompson Scholarship
It was only in 2016 that Ireland’s first dedicated Masters programme for Children’s Palliative / Complex Care was set up at NUI Galway. The Victoria Thompson Scholarship was set up to support students undertaking the Masters or Post-graduate programme. Sharon and Brian had enough funds to provide €1,000 scholarships for two nurses in 2016.
“The nurses are coming from all corners of Ireland. The students receiving the support were judged blindly to be fair and transparent. It’s kind of magical that one of them this year is a Donegal nurse,” Sharon said.
It is estimated that 3,800 children have life-limiting illness in Ireland. Some 350 of these children die each year, most of them in the first year of life. Life-limited children or those with rare conditions do not always follow a set prognosis so families need many palliative care options, which do not always exist in Ireland.
The Thompsons are currently working to register The Victoria Thompson Scholarship as an official charity. They hope to provide funds for more nursing students in the year to come and have set a target of €2,000 for 2017.
Hope for change
“I will not be content until other families can have the basic care they need, that they can come home and feel they have the links to medical staff and know that their child won’t die in pain at home,” said Sharon.
Sharon’s hope can be fulfilled through educating more nurses and enabling them to bring their gifts of children’s care to homes all over Ireland. This has been her dream since Victoria’s passing.
“You think the grief is going away and something happens to pull you back in. It’s one of those things. There have been changes, and positive changes, but there is still a lot to do,” she said.
Visit thevictoriathompsonfoundation.com for more information about the memorial fund.