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Assist Carlo

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Hi my name is Jennifer and I'm mum to 3 boys. My youngest Carlo is a very unwell boy with complex medical needs. He was born early due to worries for his health. Needing a blood transfusion on the day of birth. Diagnosed with a rare bone marrow failure Diamond Blackfan Anemia (DBA) at 3months old. He was transfusion dependent till 2yrs old when he went onto steroid treatment to produce red blood cells which he still continues to this day at 17yrs old. His thumbs are under formed a wrist/arm that doesn't turn over. He has had plastic surgery on both thumbs at Great Ormond Street Hospital. But his right thumb has completely deteriorated to point of no use and terrible pain.
Between then and now he has has a very hard time. Being diagnosed with more and more conditions. He is immunosuppressed having suffered continual infections as a small boy going onto 2 antibiotics a day for life. This with steroid dependency. Medication to help with the damage to his gut, More meds to help him sleep to being diagnosed with Autism with Pathological Demand Avoidance (PDA). Every new diagnosis has floored him and myself and just as we come to terms with them and think we can get through another comes along and breaks us all over again. Being misunderstood and bullied which gave him a terrible school life and missed education was so hard and we reached lows that nearly broke us. After over 7 years of fighting for alternative education for him we finally found somewhere that was amazing in year 11! I was fighting since year 3 primary school. He loved this placement so much and we managed to get year 12 there with the hope of him going onto Animal care/agricultural college. Then he broke his sternum in June 2021. In hospital after his xray I asked his medical background be taken into account and a CT was taken. He was diagnosed with Scoliosis and not long after Scheuermann's disease. Results from a Dexa scan in the May showed my then 16 year old also had osteoporosis. My world fell apart as did his. I've fought tooth and nail with blood sweat and tears so many tears to get him treatment for these newest diagnosis. Finally getting him a brace to hold him as his chest break was making his Scheuermann's unbearable. It took 11 months! He finally had an infusion to start treatment for his osteoporosis on Wednesday 11th January 2023 his diagnosis was in June 2021. He has a terrible reaction causing him catastrophic pain for 36 hours. He already has chronic pain this was traumatic.
He was to have intensive physio at Great Ormond Street Hospital on Monday 16th January 2023 for 3 weeks. He had this also in 2018 which he completed. Another diagnosis back then he is hypermobile which is more pain.
Through all of this Carlo has found solice in his unquenchable thirst for knowledge on his passion, animals. He has an above average ability to retain knowledge. His knowledge on animals and reptiles is amazing. He has many reptiles and two cats who are his comfort and joy. A dog who has provided him him with protection when he couldn't walk the streets without bullies. His dog has now become poorly and unable to assist him anymore.

He is hoping to be able to save and get a assistant dog. This has been his reason to go on when things were so very hard for him.
I can't work as I am his full time carer and suffer from debilitating depression and degeneration in my lower spine.
He needs help towards his mobility scooter payments as this come out of his disability payments. 
We are hoping to het him some private massage therapy as this help to alleviate his pain that his multiple knots in his muscles cause along with his bone pain.
Anything will help him towards his future that at the moment he finds hard to see.
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    Organiser

    Jennifer Hamshere
    Organiser
    England

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