Holly Smallman was born 10 years ago to proud parents Gary and Hayley but at 8 weeks old she suddenly stopped breathing and had respiratory arrest without any prior warning. She then suffered another 2 arrests in the next 24 hours of her life and became desperately ill. She was then put on a life support machine where she remained for the next three weeks until the doctors told her Mum and Dad that there was no more they could do for Holly and they had to turn her machine off!! The day arrived and all of Holly's family came in to say their goodbyes to her, the hardest thing was probably trying to explain to her 3 year old brother Josh that he wasn't going to see his sister again!! Gary and Hayley were then sent to a room with Holly where they then had to turn the machine off and wait for her to pass away. To say this was the worst day of their life would be a massive understatement!
They sat there for the next 24 hours while Holly floated in out of consciousness never knowing if the next time was going to be the final time they would see their little girl but after a very tense 24 hours Holly opened her eyes like a miracle!! The doctors were very reluctant to start feeding Holly again and give her fluids as they said to Hayley and Gary that she would never be the same again and her health needs would be so great that they wouldn't advise it.
That was the start of a whole new life for Hayley and Gary as their daughter was never going to be the same again. Holly had suffered so much over the previous weeks that she had been left with a whole host of illnesses and disabilities.
Holly now had severe complex health needs and to look after Holly, her family have all had to have special health training and life saving techniques as they said that Holly would not live to her second birthday and she was now terminally ill.
She had cerebral palsy which effects all of Holly's limbs and muscles, she now would never be able to move them independently or do anything for herself. Her sight had been severely affected and Holly would now never be able to see again and had to be registered blind. She had lost the ability to feed and had to have a gastrostomy so that they could pump feed her gradually over the day through the tube in her stomach. She also had chronic lung disease and was now reliant on oxygen to maintain her O2 levels and she is very susceptible to serious chest infections now, many of which will leave her in intensive care fighting for her life just from catching the common cold.
As you can imagine Holly needs someone to assist and care for her 24 hours a day which Hayley and Gary do by themselves taking it in turn each night to be on duty with her as she still needs a lot of medication. She also needs someone to do suction all through the night to maintain her airway and also monitor her epilepsy as she has at least 40 seizures a day.
Holly has had to be admitted to intensive care a lot over her little life to fight off many infections as her immune system is so low. Holly has had to have 2 more operations recently one to fit a tracheotomy which is a tube inserted into the trachea to help her breathe as Holly was beginning to struggle to breathe and doctors were very worried that she was becoming too tired. She was then rushed in to have a portacath fitted because she was so ill and all of her veins had collapsed so doctors couldn't get any medicine into her. All of this is life threatening for Holly.
Holly wasn't supposed to live to see her second birthday but thankfully she is proving all of the doctors wrong. Her parents just have to take each day as it comes as they never know what the next hour will bring for Holly.