May I introduce Emily, Paul, Pippa and Aiden McNamee. 5 years ago their world was turned upside down when at the age of 3 months their baby boy Aiden had his first seizure. Unfortunately this was not an isolated incident as Aiden’s seizures continued and the nightmare continued. It was the beginning of a horrible journey that would deeply impact every aspect of their lives. A year later Aiden was diagnosed with Dravet Syndrome which is a rare and catastrophic, drug resistant form of epilepsy that can bring on fatal seizures and which also requires 24 hour care. Currently there is no cure for Dravet Syndrome. Over the next couple of years most of their time and energy was spent caring for Aiden and fighting to secure the best possible treatments and resources to allow their son live as full a life as possible. Aiden is a happy affectionate child who is full of life. He loves to play, laugh and generally mess about like the proper little boy that he is.
Like many parents, who have children with unique needs, they experienced the difficulty in securing a school place for their son. Emily and Paul successfully fought to get Aiden full hours in a school that could cater for his needs and also which was close to their home and to an ambulance bay. For Emily and Paul, their little boy starting school was a massive milestone in their life. Monday, 2nd September 2019, was a monumental day for Emily and Paul as Aiden started in the same school as his big sister Pippa. You can just imagine how proud, relieved and excited they were with this achievement.
Sadly, that evening, Emily suffered a cardiac arrest while home with her 6 year old daughter Pippa. The quick reactions of Pippa was just fantastic in seeking help and contacting the emergency services which saved Emily’s life. Emily was taken to hospital, where she remains in ICU in a critical condition, fighting for her life, ever since.
With Emily fighting to recover consciousness and Aiden needing constant care and a little girl who is trying to come to terms with what has happened, Paul is now trying to be there for and care for the three people he loves more than anything in the world. Even with the help and support of both Paul and Emily’s families, their friends and Aiden’s nurses it is both a horrendous and extremely difficult time in their lives.
This page has been set up by Paul’s friends to raise much needed funds. As Emily was Aiden’s full time carer, the family now have the added financial strain of paying for the extra care needs for Aiden while Paul tries to hold down his job and spend time by Emily’s bedside. The funds raised will pay for increased child care costs, other medical and family expenses arising from their situation, future treatment/care that will be required for Emily and please God to adapt their home if and when Emily reaches a stage where she can come home.
All donations no matter how big or small would be greatly appreciated. A big thank you to everyone who has helped so far, it doesn’t go unnoticed. Please keep Emily, Paul, Pippa, Aiden and the Harte and McNamee families in your prayers. Thank You.