Thanks for taking the time to visit my JustGiving page.

In August 2010 my baby boy was diagnosed with cystic fibrosis, a life threatening disorder that majorly damages the lungs and causes problems with the digestive system.

Just like all parents we could not wait for benjy to start reaching his developmental milestones, sitting up, crawling, walking, talking .... but unlike most parents, we have eagerly anticipated the  arrival of a different set of milestones; at the age of 2years benjamin has progressed from liquid medications given by syringe to having all meds as tablets or capsules which he can swallow whole, several at a time! He is now practising bubble therapy which replaces pat chest physio. Small things that others would not need to think of but are massive steps for us! 

Benjamin is on 8 different medications a day some of which he requires numerous times a day. He needs two lots of physiotherapy lasting 20minutes, every morning and every night, and needs extra calories as his body is not able to digest fats the way it should.

There are times me and his mum imagine having a child without this disorder and how much simpler it would be, and even though it is hard work and tiring, we would not change our beautiful son for anything in the world. 

As Benjamin gets older he is likely to suffer with asthma, his medications will increase, he will be encouraged to exercise frequently so that he is able to clear mucus from his lungs. There will come a time when we will need to let him go off on his own and we will hopefully be able to empower him to feel confident and responsible enough to do so freely.

We, as parents, can not cure our son of this condition, but we can and are doing our very best to give him the best chance possible of a long fullfilling future. We fear the day we are told he needs a lung transplant as his lungs become more and more damaged with each infection he contracts. Our hearts sink when we are told he has pseudomonus as this can severly damage the lungs. We fret about his weight, constantly worrying that he is not eating enough, that he is malnourished. With every little thing we do, we always feel we should be doing more.

As you can see from the photos I have uploaded onto this page, Benjamin is a happy, beautiful young man, who makes us proud every second of every day. We could not wish for a better child.

I have done two half marathons since Benjamin was diagnosed and I intend to do many more. When the CF Trust asked me if I wanted to do the LA marathon I knew I could not say no and that I had to push myself to work hard and cross the finish line. All I need to do is to raise £1000 for the CF Trust, so please, even if you can only spare a small amount, take the time to donate on my page and show your support for my son's future. If you have met him you will know how special and amazing he is and that every mile I run and any penny donated on my page, is a mile and penny worth giving.

Thank you for taking the time to read my story and please share my page so others can read it too.