Maisie Jane Totten was diagnosed with a rare genetic mitochondrial disorder that affects the RRM2B gene on Wednesday 5th September 2018, having been on Intensive Care at Great Ormond Street Hospital for 3 and ½ weeks. Maisie passed away at just under 3 months old in her mummy and daddys arms 5 days later in a hospice, only 2 hours after arriving there. To say our lives have been turned upside down is an understatement, we are utterly heartbroken.
In the first 6 weeks Maisie behaved as normal as you would expect a baby to, she fed, slept, played, pooed and repeated. One concern was that she had been diagnosed as being profoundly bilaterally deaf, which we had only just started to get our heads around. The only other concern was that Maisie hadnt been putting on weight at the expected rate. We were told that this was OK as Maisie was feeding normally and breastfed babies can sometimes take a while to put weight on.
At Maisies 6-8 week GP check, the GP raised concerns about Maisies weight again and referred us to our local hospital to see a pediatric doctor. On 10th August Maisie was admitted to our local hospital because of her weight so they could monitor her and offer us any extra support. In the days leading up to this Maisie had been behaving differently, her feeding had decreased and she was sleeping for longer periods. 2 days later Maisie was so unwell that she had to be transferred to GOSH and we were told that she may not make the journey.
Maisie fought every step of the way and made it to GOSH where she was on life support up until 10th September where she was transferred to a hospice. The Lily Foundation supports families of children that suffer from mitochondrial disorders and leads the way in searching for cures. This is why we will dedicate all our free time raising money in Maisies name for this charity, so that other children and families do not have to live the nightmare that we are living.