Warrior of the Week

This week we would like to Introduce you to the very handsome Joshua.

So here goes… this is my son’s journey so far. Joshua was born as a healthy, happy, beautiful and perfect baby Feb 1st 2013. He progressed well and was doing so wonderful! It was when Joshua reached 7 months that I noticed him having spasms. I didn’t know what it was and asked my dad if he thought it was something to worry about. Soon after (what felt like a matter of days) my perfect boy lost head control, couldn’t eat solids anymore and any milestones he had reached were now gone. He acted as though he couldn’t see.. this was very worrying for us. I took him to the health visitor who took me straight in the GP and they did a referral to have Joshua’s eyes tested. I couldn’t wait. I walked into Morefields eye children’s hospital. We had the electrodiagnostic testing done over and over again. For weeks and weeks. No one could tell me what was going on. Fast forward three weeks….I had Joshua on the floor having some tummy time and his spasms came quick and fast. My dad walked in and instantly said call an ambulance. We were taken to a and e and admitted that day. Joshua was observed and the doctor was certain it was IS. We were sent to have an MRI and then transported to gosh. Joshua had a huge perinatal bleed. This was the cause of his spasms and also his CVI. It was devastating. We were told to prepare for the worst. G tube, surgery and filled with so much info and med plans we weren’t even ready for. I worked so hard with Joshua and he worked so hard. We were on the ICISS trial and he did amazing ! He has had no spasms since Oct 2013 and started to gain in his development. He’s now 4. The apple of my eye, my pride and joy and my hero. He takes everything in his stride and i just feel everything he does is like magic. He goes to a specialised school but is doing amazingly well! He deserves to be a hero of the week. He still has his eeg’s, still is on meds and still takes everything in his stride.

He’s a kid that’s beyond amazing to me !


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