Elliott our son was born in 2016, he is fast approaching 2 years young. Elliott suffers from a rare genetic urea cycle disorder that is incurable, this life limiting illness has completely pulled our family apart. So rare that he has now registered a new genetic disorder on the database, Elliott’s case has not yet been seen before. There is no further treatment available to Elliott he is managed completely by medicines and a strict low protein diet. This rare disease has caused Elliott to face being in a coma which has severely damaged his brain. Consequently from this Elliott suffers from a whole range of medical issues now from; Epilepsy, High Muscle Tone, Visually Impaired, Dystonia, Muscle Spasticity, Seizures, Elliott has no safe swallow.

Elliott has already undergone 5 operations and is prone to septicemia in his weekly accessed double lumen port a cath, a major risk to Elliott as the line sits in the top chamber of his heart. Elliott receives all dietary requirements through a mic-key button in his stomach for 18 hours a day with only a 6 hour safe fast. Sadly due to the brain damage and the extent of disabilities it makes Elliott ineligible for a liver transplant.

Elliotts cares are a 24/7 process that are becoming increasingly difficult as the days go on. The reason for our GoFundMe page is to build an extension on to our home to give Elliott access to the upstairs, his bedroom, to be able to bathe safely and for me to as his mother administrate drugs, needle his port a cath, replace mic-key buttons and other daily cares to keep him safe.

Elliott has the abilities of a newborn, although he is getting bigger and heavier everyday with the added struggle of him continuously going into hypo extension, throwing his head back and locking in that position. He cannot sit, talk, eat, drink or even have the ability to use his limbs in a way that a child should. Any movements are coincidence or out of his control. Don’t be fooled by all of his medical issues at heart he is still a beautiful 2 year old little boy, our little boy who deserves nothing more than the ability to enjoy his own home with his family. His smile is contagious, his love is unforgettable and once you’ve met him you will never forget him.

Why choose us to fund? My answer would be purely that we would love to have a break from the strains of struggling to carry elliott up and down the stairs, in the bathroom and needling his port a cath on the sofa, constantly putting him at risk of infection or potentially dropping him with the bigger and heavier he get. We also have a daughter with a heart condition and my partner with diabetes who fits during the night. As you can see my life it hectic, hard work but most of all the most rewarding role I will ever do.

Keeping Elliott stable is incredibly difficult, if his ammonia was to raise we are at threat to him being in a coma again, further brain damage becoming fatal. This is why Elliott is closely monitored by specialist consultants, dieticians, nurses and more on a daily to weekly basis. Constant risk of aspirating and choking on his own vomit. Constant physio on his back and chest to move the thick secretions off of his chest, rubbing down his muscles and frequent physiotherapy are just some of the daily tasks we endure.

I could go on forever writing about everything that goes on in our day to day life and the impact and strain it has on us all as a family with the frequent and long admissions. However we would prefer it if you followed Elliotts facebook page and stood tall with the rest of the army seeing Elliott in the day to day life with your own eyes.

Follow his Facebook Page - @Elliottsarmyeq