wanting to raise money for a memorial garden for my amazing beautiful son who i miss so much and never stop thinking of him and loving him ..owen was a brave little boy and im so proud to be his mum ..i want the garden dedicated to owen and for children who have lost there lives to a very rare genetic disorder called congential cockayne syndrome .. Owen was born with catarax and around 10 months old owen had eye surgery to remove the catarax and got 25 percent eye vision bk and that when owen started smiling .:) when routine checkup's came the doctors would notice that owen brain stopped growing from when he was 6 months old .. we also found out that owen was allergic to the sun (uv rays) as his skin blistered being in the sun for 15 minutes while under a sun canopy on his pushchair wearing sun cream too one sunny day we got home and owens skin was in blisters and soo red so owen had to be rushed to hospital and got treatment at it was a very stressful time as we got accused leaving owen in the sun for hours when i never as owen had not been diagnosed with his condition at this time but social services wrongly accused us of not feeding owen and neglect for sunburn ...it broke my heart as i knew i was telling the truth and i would do nothing to harm my son as i love him so much id do anything to protect him from harm ..i was so scared of losing him to social services as they not believing me that owen wouldnt keep his food down and vomit as owen wasnt gaining any weight it was my worst nightmare anyway year later a student trainee doctor came across owen on a hospital ward detour and he looked at owens hospital notes and said to owen's doctor that owen has the looks of a child with cockayne syndrome and also has some symptoms of cockayne syndrome .. that day i was very grateful for that trainee doctors opinion so owens doctor wanted me to take owen to alder hey hospital to do some skin tests to see if owen is allergic to the sun uv rays.. turned out that owen was A llergic to the uv rays and owen also had to have a gastrostomy feeding tube in his stomach to be fed by a machine as owen couldnt keep his food down and social servives didnt say sorry for wrongly accusing me of neglecting my son they just stopped visted never heard from them again .. people say to me i should sue social services for the upset and stress they caused but i disagree as they was only doing there job ..anyway some doctors at alder hey hospital wanted to talk to me about owens condition and they explained everything but i forgot what they told me soon as they told me that owen would have a short lifespan... i blanked out everything they told me about congential cockayne syndrome and i just felt pain in my heart as if my heart been ripped out and smashed up and i cried and cried and sobbed ..i could not believe what i was hearing .. my beautiful boy is going to die .. i cried for 3 days solid my eyes red raw and tired .. i searched on internet for any cures or treatment in america and learn about owen condition but all thru my heart ache i see my little boy happy and content that helped me to smile and push sadness to one side .. every morning i would wake up and see owen smiling and when holding him he gave this poweful feeling of love .. owen taught me the true meaning of love .. i carried on cos aslong as i see owen smile then i knew he was ok and if owen was ok and happy then i would be happy too .. most of the time we was always in and out of hospital due to his illness and owen being unwell then one day when owen was nearly 3 yrs old i heard owen make this horrible cry noise and he go all limp and lifeless ..owens , pale faced and blue lips .. i panicked he stopped breathing and couldnt feel no pulse i did mouth to mouth and CPR only did what i seen ppl do on Tv i was so scared i was not ready for owen to die then i heard owen make a noise and smile as if nothing had happened i held owen so tight i was shaking scared of losing him . called 999 telling them to hurry up then . ambulance came rushed us to hospital but they didnt believe me that owen died .. then every 2 to 3 days owen would die on me again and saving him with mouth to mouth and CPR and was rushed to hospital one time OWEN was fitting constantly and was intensive care and luckily came out of intensive care being his smiley self as owen couldnt walk talk or crawl ...he would just like a 6 month old baby and he loved to touch faces and smile and laugh when he held balloons or if you played peek a poo with him he just loved being with people i was with him 24/7 .. one day owen was in hospital and his heart stopped and the doctor finally witnessed owen episodes when he would die and the DR said to me IM sorry but owen is deteriorating and to prepare for the day owen life will come to and end .. i didnt want to accept it so i denied in my head that owen was going to die .. i would take little owen to a disability centre where owen would smile meeting people and children and he loved the optic fibre lights and the sensory rooms and the workers came with a plan that it be good that owen went to go school .. i felt so scared and i cried and sobbed and i explained my fears that i need to be with owen because when the time comes when owen takes his last breath then i want to be there for him and hold him tight and kiss him and he could die any time and at school plus i didnt like the thought of owen not being with me it was hard to let him go what time he had left on this earth i have to be with him no matter what but it was agreed i could go school with him and it was amazing to see owen smile and thrive and made me relises he could do more than what anyone expected switching buttons to make the frog jump and he learnt that once the frog stops jumping then he has to press the button to make it go again .. owen may not talk or walk but i relised owen does understand what to do and it was great stimulation for him that helps owen to have a quality of life ..i was so proud of owen .. now i relised owen has some understanding even tho he cant talk but he can express by pointing at pictures so i did happy face sad face .. drew faces for yes and no so owen could let me know what he wanted .. i would laugh when i ask owen if he wanted to go bed bobos and he hit the picture with sad face no .. owen gave me so much joy and fullfilled my life .just hated the episodes where i had to keep giving him CPR AND MOUTH TO MOUTH to bring him back to life .. i would take owen to see blackpool illuminations every night they was on as owen loved bright lights he was soo cute watching him amazed with the lights best memorys ever .. owen had many problems hyperthermia and hypothermia as he couldnt control his body temprerature also had physio due to painful his joints but owen made me relise that my problems are nothing compare to his as owen has sooo many problems but he still smiles even when hes unwell or after his episodes where he died and brought back to life his smile was everything owen was my rock he was the key to my heart .. one day owen stopped smiling i just knew something was wrong for a few days but owen had problems with his teeth so i thought maybe i should get owen emergency appointent before we head to disability awareness day in warrington its an avent that all the family go and get to meet some amazing children with disabilties and other families and have a nice day for owen .. but we first arrived at the dentist and get owen checked and the lady behind the counter gave me forms to fill in and as i sat down i looked at owen in my arms and noticed owens lips blue and limp looked like he was asleep but i panicked when i seen his lips blue and touching his face shouting his name but he wouldnt wake up .. i screamed for someone to call 999 and we was rushed in the back and a woman put oxygen mask on him and then did cpr .. paramedics turned up rushed little owen to hospital . that day 13th july owen got his wings and flew to heaven i kissed him and whispered i love you so much and i had to say goodbye i was in shock. my nightmare ciame true that my amazing beautiful boy has gone to meet the other angels and i no longer can hug him .. through all the struggles coping with owens fatal illness it was his courage and stength and love that got me through all the troubles and problems being stuck in hospital for months .owen taught me never to judge anyone and love is stronger than anything .. little owen was my world my everything .. i would love a to create a memorial sensory garden to open up to the public 3 days a week and for children with disabilities to enjoy as it will be a sensory garden where children can smell many flowers and herbs and see and feel many sculptures of butterflys with different colours and textures and they can paint and at night all the butterflys will lights up as owen loved bright lights and for every child that loses there life to cockayne syndrome will get a butterfly that will go on the tree with there name on the wings .. this memorial garden will be a place to relax and enjoy and inspiration from a brave little boy named owen where others can benefit from a magical sensory memorial garden and with your help i would make it possible and if anyone design sculptures to donate for the garden then i would be very grateful ..thankyou for taking the time to read this and getting to know how special my owen jacon cubbon was and i miss him so much ...life is empty without him but his memories live on in my heart every day xxx god bless