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Rocky Steady Grow

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We have set this page and donation site up to raise money for setting up a safe and enjoyable garden for Rocky at our house. For those of you that do not know Rocky personally and the great boy he is then some history around him and his condition are outlined below. By working with KEECH HOSPICE CHARITY and one of their amazing donors HEAVEN & EARTH LANDSCAPING we are getting into a position where we can provide Rocky with a garden that will really help him and his brother and sisters.

Whilst HEAVEN & EARTH LANDSCAPING  are providing the renovation of our garden free of charge, which is amazing, we are looking to raise money for the equipment in the garden. Please have a read through the information about amazing Rocky below and contribute whatever you can, every penny will help.

HEAVEN & EARTH LANDSCAPING
Shane Johnson
44 Mulberry Way
Hitchin
SG5 2TB
07507 671926

https://g.co/kgs/3AjZL6

https://www.facebook.com/bg.ytfxcfcyvtvvtttfy/


Rocky was diagnosed Juvenile Myelomonocytic Leukemia (JMML) a rare and serious chronic leukaemia in March 2012, 2 months after his 2nd birthday. With a 40% chance of survival and the only treatment option was a bone marrow transplant (this in itself having a huge relapse rate).
Rocky was whisked to Bristol Children’s Hospital, where they gave him a bone marrow aspiration. Having spent 2 weeks there, the diagnosis was official and he was transferred to Great Ormond Street Hospital to have his Hickman line fitted. Rocky was given oral chemotherapy to reduce the size of his extremely large spleen (this is where the leukaemia cells harbour)!
Mummy, Daddy, sister Yasmin and brother Josh were tested and found not to be donor matches. In July 2012 we were overcome with joy and emotion we felt that an unrelated cord donor had been found and that Rocky would have a splenectomy followed by his conditioning treatment 10 days later (strong chemotherapy to irradiate all his own cells) then recover his new donor bone marrow. He would stay in complete isolation for at least the next 2 months.
Throughout this time Rocky would be nil by mouth and endure daily bloods, medicine Chemotherapy burns of his throat and bottom as well as Graft v Host disease.
In late September 2012 Rocky was finally allowed home although under strict rules (complete home isolation until April 2013) only well adult visitors and a restricted diet (Rocky was fed through a tube until June 2013). Throughout this time Rocky was in out out of hospital with continual infections and In January 2012 Rocky got a line infection and had to have his line removed, this meant that his weekly bloods had to be done without the line.... He was so brave even when his veins collapsed and they then had to take bloods from his foot.
So far the transplant was working, but having noticed some odd eye movements and twitching at home Rocky was diagnosed with epilepsy in June 2013 as well as Chronic Fatigue occurring from his bone marrow transplant. Being prescribed several different medicines on top of daily bone marrow transplant medication. He made a huge step and started Nursery. However he didn’t talk and was diagnosed with Selective Mutism. His speech and language therapist continued to work with him, but it became very clear that he had several other issues and was diagnosed with Global Developmental Delay.
Rocky started mainstream School and after his first year it was obvious by now that he wasn’t going to cope in a mainstream setting and that he social awareness and development was not in line with his age. During this Rocky had a course of steroids and a large increase of epilepsy medication which had a major impact on his weight and he gained it rapidly. This had a detrimental effect on his mobility and tiredness therefore needing a wheelchair to help him get around. This followed a diagnosis of an Under Active Thyroid.
In 2016 Rocky started a Special Needs School. It’s amazing and he is lucky enough to horse ride, swim and do other activities.
He has had 3 lots of Grommets fitted and now requires hearing aids. 2 years ago Rocky was diagnosed with Autism, and a functional age of 3. Although Rocky has lots of ongoing issues and takes lots of medication he is a loving, happy and caring little boy.
Having just turned 9 he has come so far and fought hard and continues to do so every single step of the way.
This garden is for Rocky and his siblings Yasmin, Joshua and Sienna too. They have all had to grow up very quickly and are extremely patient. They have adjusted for Rocky and continue to do so. We are extremely proud of all of them.
Rocky loves being outdoors and for him to enjoy that we all need a safe garden where he doesn’t keep falling over, where he can build up his mobility and strength and continue to development and learn without danger or worry. He is getting stronger every day and we want to be able to continue this in his home, all together. Rocky is very sensory based, loves gardening, cooking and like every little boy loves trains!
Any help and support would be so very welcomed!
Thank you for reading Rocky’s story ... We are ready for the next chapter ...
ROCKY STEADY GROW!
Love from our whole family x
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Donations 

  • C Huxtable
    • £10 
    • 4 yrs
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Organizer and beneficiary

Claire Cruwys
Organizer
Zoe Bell
Beneficiary
Raised £790 from 13 donations

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