Fortunestown fund raiser for an amazing little girl, Abbey Mc Guinness.

(23 Jun 2016)

 

 

 

 

 

 

 

 

 

Bumbleance

BUMBLEance is part of the Saoirse Foundation. With two critically ill children, the Heffernan’s spent a lot of time on the road going to and from hospital appointments. They realised the need for an ambulance service dedicated to transporting critically ill children. Hence, BUMBLEance was created. Unfortunately, Saoirse lost her fight and grew her Angel Wings in 2011. She never got a chance to see BUMBLEance become a reality.

BUMBLEance was launched in 2013 and it quickly became the Children’s National Ambulance Service of Ireland. In 2014, BUMBLEance brought Liam on his final journey home. This was the first ever Angel Trip on board BUMBLEance. The service allowed Liam to be taken home in a sensitive, caring environment, surrounded by loved ones, in his final moments. BUMBLEance was created by parents who understand the struggle of caring for a sick child. Our top priority is the comfort and safety of our BUMBLEance children. We understand how stressful it is to transport a sick child, which is why we will be with you every step of the way.

 

 

Batten Disease

Batten disease (Neuronal Ceroid Lipofuscinoses) is an inherited disorder of the nervous system that usually manifests itself in childhood. Batten disease is named after the British paediatrician who first described it in 1903. It is one of a group of disorders called neuronal ceroid lipofuscinoses (or NCLs). Although Batten disease is the juvenile form of NCL, most doctors use the same term to describe all forms of NCL.

Early symptoms of Batten disease (or NCL) usually appear in childhood when parents or doctors may notice a child begin to develop vision problems or seizures. In some cases the early signs are subtle, taking the form of personality and behaviour changes, delayed speech, slow learning, clumsiness or stumbling.

Over time, affected children suffer mental impairment, worsening seizures, and progressive loss of sight and motor skills. Children become totally disabled and eventually die.