Team Zakk are takinh part in the Sunflowers Superhero Sponsored Walk to help raise vital funds for children and young people with disabilities and complex needs.
Our son was diagnosed with Acute Lymphoblastic Leukeamia when he was only 4 years old. He was sadly ripped out of his home, family, school, and forced into a hospital bed for long periods (one admission following his stem cell transplant, being about a year and a half). Fortunately, and we thank the Lord dearly for this, our son is still with us... sadly, many we have and he has met on his journey are no longer with us. It has been a harrowing and horrendous battle for him and us, with a lot of extreme pain and suffering... which sadly continues with a lot of his treatments. All the extensive treatment he has endured over the years has taken their toll and affected him negatively physically, cognitively and psychologically.
https://youtu.be/d74Cq_N1NxM?si=rx_f18nj_GDr1lNh
Here are a couple of news articles showing a little snippet of some details regarding our son’s journey:
https://www.grimsbytelegraph.co.uk/news/local-news/parents-heartbreaking-appeal-find-one-4695795
https://www.grimsbytelegraph.co.uk/news/local-news/every-day-success-little-boy-4925104
The treatment he has endured has been horrific….repeated cannulation, being hooked to various IVs, heart surgery, chemotherapy (periodically also into his spine), total body irradiation to various other surgeries and treaments (we've lost count of the amount of times he's been in theatre for instance)…and now under treatment under various different specialties due to life long effects. His treatment has never been straightforward, with repeated complications and ill effects, such as, a few of many examples being a pierced lung, gastro bleeding, need for repeated heart surgery, tube insertion, reduced mobility, etc. One massive factor that sadly seems to be overlooked is the isolation aspect of treatment. Especially during Covid, as the play areas were closed down and my poor son was restricted strictly to a hospital room, with one parent at a time, not being even allowed to see his siblings for months on end, which was particularly heartbreaking for both him and the rest of his family. After his stem cell transplant, even I, his mother, couldn’t visit for long periods. He was with my husband, which also separated us from him for long periods... My husband remained in hospital with Zakk through a lot of my further 2 pregnancies, and when the babies were young also missing out on a lot of time with them and also his elder sibling. The family separation aspect is extreme with an unwell child and there was little to no support…and living quite a way from the hospital made things even more challenging as we had no support from services from accommodation, to parking, fuel costs etc and with myself being unable to drive was reliant on the support from my family and church family. And being heavily pregnant caring for everyone else was also difficult (sleep and rest were a distant memory!), but it was nothing in comparison to what my poor son endured. From the horrors of treatment needed to keep him alive to watching life continue without him through a hospital window being unable to join…no birthday parties with friends, no play dates, no school trips etc…and due to his needs, when he returned home, sadly still not being included within society in many ways. We would try to take him to places that would claim to be accessible, however, sadly, most were not appropriate for our beautiful son, who would become so overwhelmed, or take unwell, and have to leave.
Sunflowers Children’s Action Group shined a light into our son and our life being incredibly supportive and finally an avenue for inclusivity. He was welcomed with open arms, as were we and he started to attend things that were made accessible by those who truly understood his needs to do so. From Doctors being present at events, to quiet rooms, medical spaces…amongst many other factors he could finally go to parties with other children, to attending a cinema club. The cinema club is fantastic as there is an understanding of the children's needs and without avenues such as this, he, as with many of the other children who attend, would find it overwhelming…and the other sad truth is that those who do not understand, can view our child with needs as at times loud and disruptive, when he cannot help it (talkative during the film or his medical machine beeping) and we can experience that negativity which further upsets him, overwhelms him and us, and we have to leave.
Sunflowers Childrens Action Group also support you when your child is in hospital. They offered a listening ear and would send at times, very thoughtful gift boxes to keep him entertained within hospital.
They understand the need for families to be together so have always included his siblings, which is extremely important, as we have been separated so much over the years we want to spend time together. They even funded an overnight stay at a hotel with other Sunflowers which created much needed precious memories together.
They are an amazing and much needed charity run by unpaid volunteers who shine their light into families who experience a lot of darkness and we are deeply greatful to them, and are looking forward to the upcoming Cinema Club!
At Sunflowers, the child is always at the centre of everything we do. We provide opportunities, activities, support and experiences that help our registered children feel included, valued and able to thrive, while also supporting the families who care for them every day.
For many families, Sunflowers is a lifeline. It is a place of understanding, friendship and community where children can simply be themselves without judgement or barriers.
The walk along Cleethorpes seafront brings together local families, friends and supporters dressed as superheroes to celebrate inclusion, strength and community spirit.
Every donation, no matter how big or small, will help Sunflowers to continue supporting local children with disabilities and complex needs and creating opportunities.
