so on the 21st march 2015 a beautiful baby boy was delivered weighing a healthy 7lbs 3oz, he was perfect. we called him Toby, he has one older brother & an older sister who adore him..our family was complete.

Toby was 4 month when we noticed he was generally floppy & still couldnt hold his head so we took him to the Gp, the doctor was concered more with the size of Tobys head, however to us it was normal so..
A couple of weeks later we had a referral appointmant at the hospital which we attended only to find out the appointment had been messed up & we was there for something that wasnt relivant to Tobys needS. We were very frustrated by this but the hospital & doctors couldnt have been any more apologetic and we soon had another appointment for Toby, however by this stage he was almost 8 months old and still no improvment from his last gp appointment..

It was a thursday afternoon we arrived at the hospital for our refferral and words cannot describe how nervous we were in the waiting room, a nurse came and asked to weight Toby while we waited for the doctor. then came our turn the doctor examined him and had no major concerns regarding his head size but asked what our worries were, i obviously stated the floppiness and he totally agreed with me, he also noticed Toby had an inflamed liver & spleen and his weight was very below what it should be. The doctor told us the symptoms lead to a disease called sturus. Toby was to be admitted to the hospital for tests but there wasnt a bed available so we had to return on the following monday at 10.00am.

Monday arrived and i just couldnt function i was so nervous, we settled toby in hospital ready for some underlying tests, we were told they taken weeks to come back. When the doctors came we were told he had a metobolic disorder but they needed to find out what kind so after 5 days of tests we were allowed home but Toby had been put on a high calorie milk and were told he needs everything to be full fat.. at this stage we assumed it was just a suppliment disease and Toby would learn to control it but we couldnt be more wrong..

We recived a letter from Tobys consultant with an appointment for the 29th january however our baby came down with bronculitious which put him back in hospital. We arrived and went through the whole process of admissions and Toby had to go on oxygen as he was very uncomfortable and his saturation levels were 88.
Tobys consultant came and took us in a quiet room and still to this point i assumed he was going to tell us what the plan was and i couldnt have been further away from the truth even if i wanted... Im sorry to tell you, Toby has a very serious genetic condition which is life limiting.. my heart sunk i broke down i cant remember much from that moment other than finding out my baby would only live to the age of 3/4 years old. My beautiful baby boy was going to be taken from us. After somehow trying to get my head around the news we had to tell family which was the hardest thing we have ever had to do. Toby spent another 8 days in hospital has one final test along with pinpointing certain parts of his body and making sure everything else was working as it should.. which brings us to today.. Tobys home with a feeding tube as we need to make sure he gets his required milk as he needs to build his strengh up and fight this for a long as he can, however in the longrun this will be his only feeding option as he will lose the abaility to swollow. My husband started back work today my children went to school and somehow were trying to get back to some normality and start living life to the full and making every second count with our beautiful boy #makingmemories

We await follow up appointments & refferals to birmingham hospital which specialise in these disorders.
Updates will be posted on here however we are praying for a miracle that our boys defines the odds or a cure will become available. We have to make everyday special...

This fundraising will be spread between ward 28 at the Lri, rainbows in the end who are going to be a big part of making life for toby as memorable as possible!! equipment will also be brough to make Tobys everyday life easier which ever way that will be and the last thing will be to help with family days special trips out and just making memories with Toby. my husband will be doing a lot of chairty work to make this horrible disease more aware and although only 1 in every 360000 babies get it nothing is not worth a cure. all sponcers will be placed on this site and updates as soon as there is one..

Thank you from the bottom of our hearts for taking time to read Tobys story xx