For the first 10 months of his life, Joshua’s health seemed fine, but after a series of infections and following his 13 month vaccinations, Joshua became seriously unwell.
Joshua spent the next six months in and out of his local hospital with no clear diagnosis before being transferred to Evelina Children’s Hospital, where he was diagnosed with Protein Losing Enteropathy (PLE). He started on a specialist milk formula and medication and was sent home. However Joshua continued to be unwell. He had developed Haemolytic anaemia and was admitted to Great Ormnond Street Hospital (GOSH), for genetic panel testing. In May 2019, when he was nearly two years old, Joshua was diagnosed with Severe combined immunodeficiency (SCID) – a rare, inherited disorder that causes major abnormalities of the immune system. The search for a bone marrow donor began.
Joshua’s Mum, Kayleigh said, “We felt so relieved to finally have a diagnosis with treatment options, but we also felt completely lost as not much is known about SCID. As we arrived on the ward at GOSH and wheeled Joshua past all of the children hooked up to monitors in their isolation rooms, we realised just how serious things were. We were terrified as to what the future held.”
Kayleigh stayed with Joshua at GOSH, whilst Joshua’s Dad and sisters, Eva and Sienna, travelled back and forth from home to visit.
“The girls were small and we wanted to maintain some normality for them, so we kept them in school and in their routines as much as possible. Joshua’s Dad would come and visit every day as we were scared that this was the last time we would get to be with Joshua. It was really tough on all of us – being separated and so worried about what the future held.”
The whole family was tested to see if they were a bone marrow match, with Joshua’s older sister Eva identified as a match. Joshua spent some time at home before receiving donated cells from his sister just after his second birthday. Spread a Smile met Joshua and his family not long after his transplant.
Kayleigh said, “Joshua’s sisters and Dad had come to visit and were waving at him through the window as Joshua was in isolation. As we were leaving the ward, two ladies from Spread a Smile stopped us and introduced themselves to the girls, entertaining them and saying hello. They told us what the charity does and that they regularly visited families on the ward. It felt like such a breath of fresh air.
“Joshua came home at the end of August 2019 and Spread a Smile stayed in touch the whole time, offering support. Joshua wasn’t able to do much after his transplant, but Spread a Smile supported the girls, inviting them on outings to see The Lion King and to the Spread a Smile Winter Party.
“The trips meant so much as they gave us an opportunity to focus on the girls, spend time with them and rebuild our relationship with them. When Joshua was in hospital I stayed with him the whole time and was the main caregiver for him. It was so difficult for Eva and Sienna as their Mum had been taken away from them. Spread a Smile enabled us to do things together that we wouldn’t have been able to do otherwise. They helped us to reassure the girls that they are just as important to us, creating memories that will last a lifetime.”
“When Joshua was readmitted to hospital in Christmas 2019 with some intestine problems, a Spread a Smile artist visited him to decorate the windows in his room. It was so wonderful for Joshua, to see his window and have the Spread a Smile entertainers and fairies visit to sing to him, deliver Christmas presents, make him smile and bring a bit of happiness and distraction into his room.
“The Spread a Smile team would always remember our names and It meant a huge amount to see people who recognised and knew us. They understood what we were going through and what we needed and we felt part of a family. Their visits gave us a chance to breathe and reset and it was amazing to see Joshua smile – sometimes the only time he would smile all day.”
In January 2020 when the pandemic hit, Joshua was allowed home, but he was clinically extremely vulnerable, so the family locked down completely, leaving them very isolated.
“Spread a Smile was there for us the whole time, offering online parties, magic shows and entertainment. Eva had a Spread a Smile Zoom birthday party and she received a gift delivered to our door. It was truly wonderful as she couldn’t go anywhere or see anyone, but her cousins all joined her online to celebrate and everyone had a great time. When the girls went back to school, Joshua also started weekly magic sessions online with Andy and his dog, which he loved.”
In August 2020, Joshua became unwell again and was diagnosed with chronic lung disease following his transplant. This left him with significant lung damage and a worrying future.
“Joshua’s health didn’t improve for a while, but there came a point where we realised that being isolated indoors, not going anywhere or doing anything wasn’t giving him any quality of life. So we decided to send him to a small, rural nursery one morning a week. He coped really well and has since started school!
“Although Joshua is thriving and his health is stable, he doesn’t have access to the same thing his peers do. Spread a Smile compensates for that. They give Joshua alternatives that work for him, for example when he went on an outing to see Frozen – the Musical. It was such a special day for him and something he wouldn’t have been able to do without Spread a Smile.
“When Joshua was asked recently what the good things in his life are, he said Spread a Smile. They are one of the biggest positives we have and are part of our family. Although every event and activity is about entertaining the children, there is always someone for us parents to talk to as well. When you’ve been through such a traumatic experience, it’s amazing to be able to find that support and moments of relaxation and kindness. We really can’t thank Spread a Smile enough for always being there and for everything they do.”
Joshua is now under the care of William Harvey Hospital and is looking forward to having the opportunity to meet more Spread a Smile entertainers in person as part of our partnership with the hospital.
Please help ensure we can continue to support children like Joshua and their families by donating today. Thank you.