A Letter sent to Billy Higgins in April 2016
As the parent of a child who attends Ballaghderg Special Needs Preschool in Letterkenny, County Donegal I felt compelled to write you to thank you personally for the very generous donation you recently made to the pre- school.
My son Órán is six years old and has attended this pre-school, which cares for children with special needs and children with complex medical needs, for the last three years. Órán suffers from Mitochondrial Disease which is a rare, progressive genetic condition which sadly has no treatment and no cure.
Órán cannot walk, talk, feed himself, is fed through a gastrostromy tube, has global hypotonia, hypermobility, global developmental delay, chronic seizures on a daily basis, suffers from gastroesophageal reflux disease, susceptibility to infection and poor growth to name but a few of his complications. He must take up to 20 medications each day to try to control some of these symptoms. Yet despite all these problems, he is a bright, happy, sociable little boy.
We were instructed by Órán’s senior Neurology Consultant based in our National Children’s Hospital in Dublin, under whom he is cared for, that we would be unable to send Órán to any mainstream pre-school, as they would be unable to provide a safe environment for him (particularly given the fact that he has already gone into cardiac arrest twice at home and his tonic clonic seizures are so severe, that they are capable of stopping his heart) and also due to the fact that no other pre-school would be insured to care for him. He requires 24/7 care and due to the severity of his seizures and risk of choking, must be cared for in a facility which has qualified nursing staff on the premises. The hardworking staff there provide a safe, stimulating, caring environment in which all of Órán‘s needs are met and provide my husband and I with some much needed and welcome respite.
Ballaghderg Special Needs Pre-School, here in Letterkenny is the last remaining special needs pre-school for the entire County of Donegal. They cater for a high number of children who travel from right across the county to attend this wonderful school as their needs cannot be met in a mainstream pre-school facility. The pre-school have a nurse on the premises at all times who also has epilepsy management training and can provide the high level of care required to cater for Órán and several other children with serious medical conditions and those with severe intellectual disabilities. Órán absolutely loves his pre-school and it has proven to be a lifeline for me as his full-time carer. The level of care and mental stimulation that is provided in his pre-school is of the highest standard and the staff there, go above and beyond their duties to make sure that each and every child is happy and well cared for. The many therapists that Órán attends (speech and language, occupational therapy and physiotherapy etc) are able to visit the pre-school and give him and the other children their therapies on site on a regular basis. They learn through song, water play, sensory, sign language, picture exchange, and other alternative alternative methods are also used to relax them and help with pain management such as reflexology, massage and sensory stimulation. To say that I have seen a significant improvement in Órán’s emotional wellbeing since he has begun attending Ballaghderg Special Needs Pre-School would be an understatement and a huge dis-service to the staff there. They are in-tune with his every need and can spot subtle changes in his behaviour or physical changes immediately and act upon them. He is a happier, more contented child since he began in pre-school and he looks forward to attending there every day. I, nor my husband ever have to worry while he is there, as we are confident in knowledge that those who are caring for him, are fully trained and he is in a safe environment. They understand the seriousness of his condition and strive every day to provide him with some level of independence. In short, Ballaghderg Pre-School allows Órán and all the other children there, to achieve their maximum potential, whatever that may be.
Currently the pre-school has no sensory room for the children, which has been scientifically proven to relax and stimulate children with special needs. They currently have to travel almost an hour away to County Derry to avail of a sensory room experience for the children which involves great expense and effort on the part of the staff and a great deal of upheaval for the children. Now, due to your most generous donation, they can finally achieve one of their dreams (which was unattainable till now, due to a lack of funding) of providing the children with their own specially designed sensory room on the premises which they can access every day. You have no idea of the amount of enjoyment this will bring the children and allow them to experience different sensations and feelings they would normally only be able to every couple of months.
I cannot thank you enough Mr. Higgins, for making such an amazing difference to the lives of the children who attend Ballaghderg Special Needs Pre-school, including my son Órán. Your wonderful gift has far reaching implications in the lives of so many little children, for whom daily life is a battle and you will have given them so much joy and contentment. I am attaching a picture of my precious son Óran so that you will see, despite all he endures, he is for the most part, a happy, contented little boy.
God bless your kindness and I wish you and your family every blessing.