Thanks for taking the time to visit my JustGiving page. We are raising money for 2 charities, the first is Breast Cancer Awareness and the second is Unique. 30% of everything we raise will go to Breast Cancer Awareness and 70% to Unique.

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity. So it’s the most efficient way to donate – saving time and cutting costs for the charity.

Rather than me explain why I am doing this, I thought instead I would let you read the words of Sam, a close friend of ours whose little boy Otis was the inspiration for doing this event. This is their story........

 

"Otis was diagnosed with a Rare Chromosome Disorder, 3q13.11q13.33 Chromosome Deletion in October 2013. From birth we knew there was something different about Otis, he was a low birth weight, could not latch on to breast feed, could not support his head at 3 months and was late to smile. For these reasons he was seen by a Paediatrician at 5 months old who then arranged appointments with genetics and further testing.

 

Otis has a development delay in his speech and language and physical development. He will be two in April 2014 and is currently unable to crawl, walk or eat normally. We cherish every milestone! My husband and I are not carriers of this chromosome deletion and therefore the chances of creating a little person like Otis were low, but we did!

 

 

You are probably thinking what does this rare chromosome mean? It basically means that a significant number of genes (approximately 68 for Otis) are missing from his 3 chromosome on the ‘q’ arm and this has caused all of his development problems, it is also the cause of his short sighted vision and feeding difficulties. He was unable to breast feed because of his low muscle tone in his face and it is common for babies like him to not take well to breast milk. Otis has been unwell with chest infections and has spent time in hospital and his most recent admission to hospital was because of Aspiration Pneumonia, which we now know is common in people like Otis. Following his last hospital admission it was discovered that he has an unsafe swallow, silent aspiration and that it is unsafe to feed him by mouth. For 20 months of his life Otis took a bottle, managed what he could and was struggling to feed. It is because of this we think he is a strong and courageous little boy! We are relieved that he doesn’t have to struggle now and is being fed via a feeding peg in his tummy; help will be given to guide us with his nutrition and his ability to feed himself in the future.

 

 

Otis is special and like other people with a Rare Chromosome Disorder the future is unknown! No-one is even able to tell us exactly which genes are missing from his Chromosome. Therefore, it is unknown as to whether he will achieve specific milestones and when. After his diagnosis we didn’t know where to turn but we were given the organisation name, Unique, Understanding Chromosome Disorders. We researched into Unique and became members. The support and information they have given us has been extremely valuable. They put us in touch with a support group and sent us up to date information on people with 3q13 Deletions and Microdeletions because these people are similar to Otis. This leaflet was emotional to read because there are statistics of people similar to Otis and from reading this we have that reassurance that we are not alone in what we are going through. Information like this is important to us because we are able to see how other children have developed into adulthood but of course each individual can vary greatly.

 

 

‘Unique’ is an organisation close to our hearts, they will be with us throughout the rest of our journey to support and guide us. Please take time to donate. Without them we would feel isolated and confused. The work and research they do on all chromosome disorders is outstanding. Unique do not have a person on their database with Otis’ exact deletion number sequence yet. Therefore, raising money for this cause will also help to increase awareness of this fantastic UK based charity (reaching people worldwide) so one day we may even find Otis a friend with the same chromosome deletion?"