Team Hector
Hector Ralph Howlett was our longed-for rainbow baby. He completed us and made us all so proud. Hector hit all his milestones and was a happy, strong, normal little boy.
It wasn’t until he was 10 months old that the seizures started out of nowhere. We were transferred to PICU at Great Ormond Street Hospital and spent a terrifying month in and out of hospital. Doctors couldn’t work out what the seizures were or how to control them, before Alpers, a form of mitochondrial disease, was confirmed on 22nd October 2021. The day that changed our lives forever. We remember looking at our beautiful boy not believing it to be true. He had been fine. And now we were being told there was nothing anyone could do and that our brave boy would most likely not last more than a few months.
Over the next few days, we learnt more of what this diagnosis meant and how to administer all the medications that would make him comfortable. Hector had already lost head control, but I refused to believe that he would gradually lose all his skills; mostly I refused to believe that he would lose his personality and his cheeky smile. Sadly, the doctors were right, and less than four short months later Hector took his last breaths in our arms at home.
As a family, it was such a devastating shock to receive his diagnosis but what was even harder was watching his decline. He lost all his skills and by the end he could no longer move, smile that beautiful smile or swallow. His care was 24/7 but we were determined to have him at home surrounded by love and his things.
Our sweet brave boy will forever be 15 months old, and our hearts will never recover from losing him. But our love for him, and the ongoing fundraising that friends and family have committed to, has given us so much hope and strength.
How to support Team Hector
Hector’s family would love you to support The Lily Foundation’s work. Whether it’s a one-off gift or a regular contribution, simply follow the link below to visit their JustGiving page and join the hundreds of others who have already made a difference.
Your donation will help fund groundbreaking research into mitochondrial disease, raise vital awareness and support hundreds of patients and families affected by this little-known but incurable condition.
Since 2007, The Lily Foundation have already raised over £11 million. With your help, we can continue to fight mito and find hope for everyone affected.
