Amelia is a SWAN child (Syndrome Without a Name); she has an unknown neuromuscular condition and has been going through an eightweek, gruelling treatment regime at Great Ormond Street Hospital. The condition affects all her muscles and movement in her limbs, causing weakness, pain and fatigue. It also affects her gastric and respiratory system, so she often needs to use a feeding tube.
Lockdown has been a frightening time for all of us, but especially for Amelia and her family.
Due to COVID-19, Amelia’s recent hospital stay was much longer than normal, but Camp Simcha made it bearable.
Amelia has had to cope with surgeries, distressing procedures and frequent hospital stays and treatment but Camp Simcha is always
there supporting the family, practically and emotionally.
With only one parent allowed at the hospital, Mum Lisa isolated with her at Great Ormond Street in London while dad Martin was in Harrogate with her brothers. For a family with a SWAN child, life is already very uncertain; add a pandemic and it becomes terrifying.
Amelia’s Camp Simcha Family Liaison Officer is Robyn. She has been in constant touch with Lisa and supported them by sending in essential meals, arranging hospital transports – and providing gifts and activities to lift Amelia’s spirits and make each day feel a little less isolating for Lisa.
As life gets back to normal for many of us, the uncertainty continues for families like Amelia’s. Please do what you can to help this difficult time become a little easier.
“Having Robyn at the other end of the phone whenever I needed – and everything she arranged for us – made such a difference, especially
with the rest of the family so far away. Our time in hospital was hard; without Camp Simcha it would have felt impossible.”