Just 11 months with 
their darling baby

By Margaret Clayton BABY Brionni Alexander lived for just 11 months. But for every moment of that time she brought great joy to her parents.  Last week her mum Tracey Craig and dad Gareth Alexander smiled proudly as they pored over an album of photos. Every one is a treasured memory of their little girl, born on January 13 last year in Falkirk Royal Infirmary.  She was a healthy, plump baby weighing more than nine pounds.  “She just looked up at us and clutched our fingers and we fell in love,” said Gareth. For three months, life at the family home in Grangemouth was a round of late-night feeds, noisy bathtimes and walks in the park. Then Brionni went for a routine check with the health visitor.  Tracey and Gareth mentioned she didn’t kick her legs very much and her movements were limited. Blood tests revealed their darling baby had Spinal Muscular Atrophy. Heavy hearts It’s a genetic disease — one in 40 adults is a possible carrier and it kills more babies than any other genetic condition. Doctors said she was unlikely to survive to her first birthday. “We left the hospital with heavy hearts,” said Tracey. “It felt as if our world, our hopes and dreams had crashed around us. Of course we asked ourselves why it happened to us.  “When you have your first baby it changes your world forever and we were so happy with Brionni. We had plans for the future, we wanted to show her so many things, take her so many places. “Brionni’s aunts, uncles and grandparents were devastated too. We talked and cried together but life has to go on — nappies have to be changed, clothes washed and food prepared.  “We resolved that if Brionni only had a year to live we were going to make it very special. We fitted more into those months than you could imagine.  Chest infection  “We had a wonderful family holiday in Torquay and she laughed with excitement when she saw the sea. A happier baby you’ve never met.” In September 2000 Brionni was taken into hospital with a chest infection. She pulled through but she no longer had a normal sleeping pattern and had to be tube fed. “When she came back home she needed round-the-clock care,” said Gareth. “If she choked, we panicked, because only the nurses could clear the fluid out of her throat.  “We were at a very low ebb — and then Brionni was offered care at Rachel House. From the moment we arrived there we felt safe. The nurses were so tender and loving with her. It meant we could sleep knowing she was in safe hands.  “When your child is sick that’s the greatest gift you can get — just to know she’s being looked after by people who put her first.” For three months Brionni, Tracey (27) and Gareth (25) had regular visits to the hospice. They wheeled her round the garden in her pram. They showed her all the brightly-coloured toys in the playroom and the sensory room and they made friends with other families whose children were at the hospice. “We found it really helped because we could talk openly and honestly with people going through the same experience,” said Tracey. When the couple took Brionni home, a nurse from Rachel House went with them and gave her one-to-one care. On December 13, Brionni died in hospital.  When Tracey and Gareth were asked where they wanted her body to lie, they agreed she should go back to Rachel House, where she had been so happy. For six days before her funeral, her family were able to spend time with her in the Rainbow Room. There were no restrictions or rules, just hours of peace and quiet and time for everyone to say goodbye to the little girl at the heart of a family who loved her so much. “At first we found it difficult to talk about what had happened,” said Gareth. “But the staff were so understanding and spoke so naturally about our daughter that it helped us come to terms with our grief.” Today in their home in Grangemouth, Brionni’s brightly-painted room is still filled with her cot and piles of her favourite furry toys and dolls. There are photos of her everywhere. The couple think it’s unlikely they’ll have another child because there’s a one in four chance it would have the same genetic condition. They have set up the “Brionni Trust” to help raise funds for CHAS and for those who suffer from Spinal Muscular Atrophy. Sponsored bike ride In just over a year they’ve raised an amazing £30,000. Next October they’re organising a sponsored bike ride in China — they hope 50 riders will take part and raise £100,000. “The charity work helps us to do something positive for others and it keeps Brionni’s memory alive,” explained Gareth. “So much money is needed to keep Rachel House going and to keep up the high level of care the children and parents are given.  Please join in  “Unless you’ve been in this position where your child is dying and you want the best for them, it’s hard to understand how important the work of the hospice movement is for families. “It’s heartbreaking to realise there are so few places available for children in the whole of Scotland. That’s why we think it’s vital that a new hospice is built.  “We’d ask all Sunday Post readers to please join in and raise the money to give terminally ill children the very special care they deserve.  “Can you think of a better cause to support?”

You can e-mail us at: hospice@sundaypost.com