Two Nottingham mums have spoken out about the heartbreaking loss of their sons. Amanda Sotos-Castello and her step-daughter Imogen Sotos-Castello are raising money for Rainbows Hospice after caring for their sons who sadly passed away.
57-year-old Amanda, sadly lost her son Luke, aged six, to a rare disorder, Infantile Neuroaxonal Dystrophy, in 2000. Then, in 2019, Imogen, 33, devastatingly lost her son Otis.
The two have shared their devastating loss of their two children. “After losing Luke, I never imagined our family having to go through such heartbreak again,” said Amanda.
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Luke was born in 1993 and at around 13 months old he became less confident and started to fall. He endured a year of tests and scans and was eventually diagnosed with Infantile Neuroaxonal Dystrophy, a rare inherited disorder of the nervous system.
She continued: “We started to notice that Luke was becoming less active. He stopped trying to walk, then he stopped crawling and by the time he was two he was barely able to sit up and had the care needs of a new-born baby.
“Notwithstanding his significant disabilities he was a big presence, he was always smiling and laughing and had a great sense of humour. Luke changed my life; my experience with him made me re-evaluate what is important in life and I learnt to find joy in living in the moment and appreciating and being grateful for the smallest of things.
“When I became pregnant again with Luke’s sister, Cass, who is now 26, it was so difficult as there was a one in four chance she could have inherited the disease, but there was no way to test for this either whilst I was pregnant, or after she was born. We simply had to wait and see. We were constantly looking out for any signs she may be regressing for the first 18 months of her life; it was really tough thinking that we could lose both of them.”
In 2019, Amanda and her husband Andres became grandparents when Imogen had Otis. But sadly, at the 20 week scan, Otis was diagnosed with CDH, a condition where a baby’s diaphragm doesn’t form properly.
At 29 weeks, his placenta also failed, and Otis had to be delivered by emergency c-section. Imogen said: “Myself and his daddy, Steven, were told he was unlikely to survive the birth.
“Our beautiful son Otis, however, beat all of the odds, and continued to amaze everybody involved in his care. He overcame many challenges in his short life, including major surgery, recovering from a heart attack, and suffering bleeds on his brain and lungs. He spent his entire life on a ventilator, and much of his life sedated, but never once gave up his fighting spirit. He strived to be the very best he could for himself and everybody else, and we will love him forever for it.
“Sadly, after seven weeks and one day, the intensely difficult decision had to be made to take Otis off life support, as his lungs were never going to be quite good enough, and we took him, as a family, to Rainbows, to allow this heart-breaking event for all involved to happen in a calm, dignified, comfortable and supported manner."
Both boys were cared for at Rainbows Hospice for Children and Young People – which specialises in end of life care and bereavement support for families from Nottinghamshire.
The two mums have praised Rainbows Hospice for the support they received during such a difficult time. They will be taking on Rainbows’ 10 mile Peak District Walk on Sunday 21 May.
Imogen and Steven have raised more than £12,000 for Rainbows, last year the pair took part in the Peak District Walk with their son, Otto, 2, who was carried on Steven’s back.
Imogen continued: “The service and care provided by Rainbows was second-to-none, and we felt incredibly lucky to be able to access their support, which is ongoing to this day.”
“Everyone at Rainbows was so supportive and the environment is so safe and secure. We were never able to take him outside apart from the ambulance journey to Rainbows. It wasn’t something that had even crossed my mind but after he died, one of the staff at Rainbows suggested I take him in the garden.
"It felt like such a normal thing to do, put him in the buggy and walk him round, it was amazing and a memory that will stay with me forever.
“Otis was in the Bereavement Room at Rainbows but it was so comforting to know that staff checked on him every night and they also provided us with so much support organising his funeral.
“We want Otis's memory to live on forever, and for Rainbows to be able to continue to provide the same amazing input to other children and families undergoing similar difficult circumstances, and want to continue to help to raise funds for them over the rest of our lifetimes.”
Amanda also praised Rainbows who supported her son in 1995, she added: “It was such a blessing for me and my former husband, Bill.
“The thought of leaving our child was so hard but we were able to stay in a family flat and everyone was so supportive. I can’t speak highly enough of Rainbows. After Luke died, Rainbows was so supportive of us as parents and Cass, as his sister. She really benefited from the sibling support service for many years.”
Claire Hoggan, Rainbows Event Fundraiser added: “Amanda and Imogen, and their wider family, have been through so much and we can’t thank them enough for supporting us. We hope other people will be inspired to take part in the event, or do their own fundraising for families like theirs.”
To support Amanda and Imogen, visit justgiving.com/fundraising/imogen-sotos-castello1
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