A little help for little Hari

LIFE CHANGING -
 On the 13th of February 2016, our special beautiful baby boy - Hari John Cain Jones, was born at Gwynedd Hospital Bangor North Wales. We couldn't wait to get him home to show to everyone but complications during birth happened which resulted in us being in the hospital a further 11 weeks.  Test after test and result after result they decided to transfer us to Alder Hey.

 We were transferred to Alder Hey Liverpool so that Hari could get the specialist help that he needed and an operation. He is unable to feed properly and was given a gasostramy peg( feeding pipe into the stomach) to help him feed and grow. He also had a muscle biopsy (from the thigh) to try and diagnose what was wrong.

 The operation was a success but due to a viral infection he had 2 days before, he was put into hdu   (high dependency unit) which was lucky as 3 days after, while he was in Ellen’s arms, he had a funny turn and went into a cardiac arrest. His lungs had collapsed and due to all that was going on he could not cope. Still he fought through. Fighting for his breath he was put onto an oxygen machine to help him breathe easier.

Stressful times ahead we kept fighting his corner waiting for him to get better, waiting for that smile. Three weeks past and better he became. He is becoming stronger and stronger each day and has an even bigger smile. (This must be it no more bad news)

Unfortunately it wasn't, even though he is 90% there he is still in hdu. A long 18 weeks has past and our life has just been put upside down. Hari has been diagnosed with a very rare and severe muscle condition; it only effects 1 in 50,000 children and was only discovered and diagnosed in 2001.

-----------------MYTUBULAR MYOPATHY------------------
maybe easier for you to check it out on the internet rather than me explaining.

They have said that we might be in Alder Hey for a further 3 to 6 months.  An even longer road ahead which I wouldn't change for the world. How much this will change my little family’s life I can only imagine.

We’ve already had brilliant support on a personal level but now we as parents are beginning to  struggle. Funding for help for the necessary equipment due to being in Wales is virtually impossible. It will take  months before we are able to come home  which puts us under more financial pressure.
We as a family are trying to raise some money to help us at this stressful and hard time with travel expenses backwards and forwards to Alder Hey which is 150 miles from home.  We also have a six year old daughter, Tiami, who we have had to leave with grandparents as we travel backwards and forwards to Alder Hey. Due to Hari’s circumstances I now have to give up work for the foreseeable future but hope to return as soon as I’m able.
 we do not usualy ask for help as we are the once that rather help others but surcamstances have  changed and now we ask for your help please.
thank you 
Michael,Ellen,Tiami and Hari x