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On June 12, 2019 our second little boy, Timothy, made his way uneventfully into the big world at 39 weeks. However at only 2 hours old, he suffered a spontaneous cardiac arrest and was rushed, critically ill, into the NICU at King’s College Hospital where he remained for the next 10 weeks.

During his admission, it became clear that Timothy was incredibly rare and affected by some kind of genetic condition, which impacts all areas of his little life.

Hypotonic, severely hypermobile (now diagnosed with Ehlers Danlos Syndrome), Global Developmental Delay significantly impacting gross/fine motor skills, cognition and communication, weight gain issues, macrocephaly, non-epileptic absences, mostly non-verbal with a language disorder, predominantly tube fed via a naso-gastric tube, and not yet able to walk independently, progress through life for Timothy has been slow, stressful, emotional, and very confusing.

In November 2021 we were extremely lucky to be offered a place with Small Steps.

Small Steps are a UK charity based in Richmond, providing specialist support and help to physically disabled children and their parents, through the principles of Conductive Education.

Timothy attends a class with a maximum of five children, all working towards similar goals, once a week during school term time, for two hours. In these sessions, he is supported in active learning through a holistic education process. The children are differentiated in their activities and working towards their independent targets and the acquisition of new skills and play in a routine based setting, where the focus is always on the positive.

In a current session, Timothy will be able to work on his gross and fine motor skills, communication, social skills and co-operation, and cognitive functions, whilst enjoying themed activities, singing and Makaton, and a final group snack time where everyone has the opportunity to celebrate their child’s achievements that day.

Over the past 18 months, the progress that Timothy has made is incredible. His genetic disposition provides us with no future predictions for his development, and so every step he reaches is one we were never sure if he could. Small Steps give us possibilities, hope, and joy, and every week Timothy arrives with huge smiles for his family in orange.

All families attending Small Steps are completely supported, with no financial contribution required. They are completely reliant on their fundraising and donations in order to raise the £400,000 it takes to operate each year.

In celebration of Timothy turning 4 today, we are hoping to raise some money to give back to Small Steps for all that they have given us, both for Timothy and for our family. Every £1 counts, and we would be so grateful for your support, to celebrate the little boy who never, ever gives up despite being so incredibly rare, unique, and mysterious, and for all the precious children that Small Steps help to grow.