Alex is 9 years old and has Infantile Neuroaxonal Dystrophy (INAD) which is a rare inherited disorder affecting the nerves in the brain, and elsewhere in the body, causing deterioration of many functions. Alex has epilepsy, central apnoea and relies on oxygen 24/7 for breathing and a gastrostomy (a tube straight into his stomach) for feeding.
Alex's mum Lucie says;
In the last few months Little Harbour has been nothing short of amazing
The care team have been in regular contact with the family; calling, visiting Alex at home, arranging overnight stays for the family at Little Harbour and Alex's 4 year old sister Faye has been supported by the dedicated sibling team.
Lucie explains further; “We know Alex is now near the end of his life, we have been shown Starborn; the room we plan to use once Alex has passed. The Little Harbour team helped us to fill out a wishes document with such care and have been working closely with the other professionals involved in Alex’s care.”
A highlight of Alex’s visits to Little Harbour is always using the jacuzzi;
“Using the jacuzzi is such a memorable experience for us when we are at Little Harbour. It is always very special to snuggle Alex in the water where he instantly feels relaxed, happy and weightless in the water.
To see his body relax is beautiful, staff are on hand to help get Alex into the water, position the oxygen where it’s needed, put music on and they often come into the water with us too. It’s an activity we all enjoy doing as a family and the team aim to get him in everyday when we stay. Alex loves it and I will treasure these memories forever.”
“The whole team are just amazing, from fresh delicious meals, activities for Faye, a lovely bedroom for us to rest in and of course the music therapy provided by Richard; last time we stayed we had a music session in the garden. Just recently at home Alex was too tired to join a music session on zoom so Richard sent through a video which Alex watched once he was awake; he very much enjoyed it and loved seeing a familiar face.”
I just can't praise them enough, we can honestly say we love Little Harbour and everyone involved. They have given us so much comfort in such a sad situation.
It pains me knowing soon we will lose our gorgeous boy but already I know being there with them will be just what we will all need and just like the harbour walls song says we will be comforted by the Little Harbour walls at that time.”