Pray for Elliot

Four-year-old Elliot has an extremely rare life limited condition, Chediak-Higashi Syndrome (basically no immune system) and Oculocutaneous Albinism (clinically blind), these are linked diseases to each other only. After years of sickness after sickness and no idea that there was a root cause. Doctors took a more thorough look, after numerous visits for seizures, they discovered that he has one of the rarest disease in the World. There is less than 500 people worldwide that have this condition. It becomes fatal by the age of seven. 
 The doctors have found that Elliot is the rarest out of all the people with this condition. They have found that Elliot does not have the same cause linked to this disease as every other patient with this disease and because of that, the doctors are needing to take extra precaution than usual, with a 36-65% survival rate for the actual surgery. Untreated, life expectancy is seven years old.
 
Elliot will be receiving chemotherapy and a bone marrow transplant any day now as we are waiting for the call, with a six month to one-year minimum recovery. A central line will be placed in by his heart, for chemotherapy, blood work and medication throughout his treatment and as he recovers. He has to be monitored currently even through the night due to seizures, loss of breathing and sudden harsh infections.
 
Additionally, since birth he has ‘trigger finger’ which has developed his whole hand to now spasm out of control. He is due for surgery after we received an ‘okay’ that he is fully recovered from his bone marrow transplant. 
 
His sight is effected daily, he is unable to see outside with the sun or near any type of LED lighting such as offices, classrooms, iPad, TV and even our own home, he has to wear darker glasses to help him see, but the glasses aren’t the best, he still struggles, as they don’t cover around his whole eyes. Second surgery on his eyes again in the near future.
 
We have started this fundraising page to raise awareness of both Chediak-Higashi Syndrome and  Oculocutaneous Albinism; to raise money for personal expenses and comfort for Elliot Ezra during his battle and living with Chediak-Higashi Syndrome and Oculocutaneous Albinism and also to raise money for the charity ‘The Sick Children’s Trust’. Our target is £1000 for The Sick Children Trust and will be managed by Amanda’s Charity Sweet Shop who is in partnership with The Sick Children’s Trust.
 
On behalf of Elliot and his family, we thank you in advance for your prayers, love, time and support.