Launch of the Maia Mouse Foundation
THE parents of a young girl who passed away after being diagnosed with a rare genetic condition say the charity set up in her memory will be a “lasting legacy” of their much-loved daughter, writes Will Roberts.
Joe and Gemma Baum, originally from Barnard Castle, have been working tirelessly to establish the Maia Mouse Foundation, named after Maia Olivia, who was diagnosed with a rare form of cancer of the central nervous system in January 2016 and passed away four months later, aged eleven months.
“We have got a lot of comfort from setting up the charity and we want it to become a lasting legacy of our beautiful daughter”
The couple, who met at Teesdale School but now live in West Yorkshire, said setting up the charity was the best way to focus their emotions after the loss of Maia. The new charity will help other families who find themselves in situations similar to their own.
Born on 4th June 2015 following a healthy pregnancy, Maia spend the first six months of her life growing and developing normally.
“Maia was very sociable – we took her everywhere, she was always smiling and she was growing and developing as any baby would,” said Gemma, whose family live in West Auckland.
It was at Christmas when Maia’s parents realised something was wrong and following a gruelling month in and out of hospital, she was diagnosed with an extremely rare genetic condition. Doctors said she could only have weeks to live.
“The hardest part was that there was nothing anyone could do, no treatment and nothing to save her life. As parents it’s the worst thing you could ever hear,” said Gemma.
Although devastated, the couple decided to make the most of the time they had left with their daughter. They drew up a bucket list, called ‘The Adventures of Maia Olivia’.
“There was so much that our little girl would never get to do so we started by writing a list of all the things that we really wanted her to experience,” said Joe.
Family and friends joined the couple on the adventures, which included trips to the seaside, a party, swimming, a christening, visiting a farm, riding on a train, walking part of the Pennine Way and visiting Buckingham Palace.
An Instagram account was set up so those who knew Maia could follow her adventures.
“Maia loved every minute of it so we wanted family and friends to see her enjoying the places we were taking her,” said Gemma.
“As hard as it was we had to put our own pain to one side in order to care for Maia and give her the best that we could. There was so little we could do about her illness but what we certainly could control was her happiness. I’m confident Maia only ever knew love in her short life.”
The couple say that those adventures and experiences shared with Maia gave them strength at a difficult time.
“Maia’s adventures were simply amazing, we had so much sadness in our lives but at the same time we were having some of the best days of our lives with her,” said Joe. “We have a lifetime of memories which we will cherish forever.”
The newly-established Maia Mouse Foundation will help families of children living with life limiting conditions by providing grants to allow them to enjoy trips and experiences which they may not have had the opportunity to do otherwise. The couple said that one difficulty with looking after a sick child is the constant worry about work and money.
“In a sense we were lucky because we could make these memories, taking the time off work to share experiences with our beloved Maia,” said Joe. “Not everybody has this opportunity, and as your whole world crumbles everything around you continues, from work, to mortgages and beyond.
“As hard as it was we had to put our own pain to one side in order to care for Maia and give her the best that we could. There was so little we could do about her illness but what we certainly could control was her happiness. I’m confident Maia only ever knew love in her short life”
The Maia Mouse Foundation will be officially launched on Sunday, 30th April with a sponsored walk, called Maia’s Memory Walk at 11am in Hawes, North Yorkshire. There will also be a charity launch party on the same evening at the Jersey Farm Hotel in Barnard Castle.
“We took Maia on this exact walk last year with some family and friends, it was such a lovely day, we thought that doing this as a charity fundraiser has significant meaning for us all and we will certainly be thinking of our beautiful girl,” said Gemma, who gave birth to Maia’s brother George in January this year.
Tickets for the Maia Mouse Foundation launch party at the Jersey Farm Hotel in Barnard Castle on Sunday, April 30, cost £20 including food, DJ and live music. To buy tickets call Gemma on 07729-983344 or Ingrid on 07812-949671.
The couple is hoping for a big show of support and welcome anyone who knows them or has been touched by their story to attend the sponsored walk or the launch party and make a donation to the charity via their Just Giving page.
PHOTO CREDIT: Claire Collinson