“Well what are we talking about here quality of life or quantity?” That was the question we asked Professor Bryan Lynch consultant Neurologist at Temple Street Hospital on 14th November 2002. His response, “I really can’t tell you”.
That was the 1st day our lives changed forever.
Let us backtrack a little here. Our son Conor was born in January 2001. He was a happy contented child, however we noted that he did not meet some of his milestones such as sitting unsupported, crawling, standing or walking by the time he reached his first birthday. We brought this to the attention of the community nurse who put it down to laziness. Our GP referred us to a paediatric consultant in Drogheda. After a battery of tests including a CAT scan, nothing conclusive was revealed.
We were subsequently referred to Bryan Lynch in Temple Street where Conor was admitted for 5 days of extensive neurological and blood tests including MRI scans which is where we get back to the start of Conor’s story.
On the evening of 4th day of his stay in Temple Street we were summonsed to Bryan’s office where we were told that Conor had a degenerative neurological disorder affecting the white matter of the brain called Leucodystrophy – hence my question about the quality or quantity of life. At the time he could not tell us what form of Leucodystrophy Conor had or how severe it might be and we would have to wait a number of weeks for the results of blood tests sent to Manchester for analysis.
Our world fell apart. Here we were with a beautiful, happy, otherwise healthy 18 month old with huge question mark over whether he would survive or if he would have any quality of life.
Over the next few weeks we researched Leucodystrophy and all the while, results of his blood tests were trickling in eliminating all of the known forms of the disorder. Finally we were left with an unclassified form of Leucodystrophy.
During our research we came across a hospital in Amsterdam called the Centre for Children with White Matter Disorders. This centre was headed up by an eminent researcher of Leucodystrophy (one of the forms of Leucodystrophy was named after her – Van Der Knaap Syndrome). They offered a referral service for second opinions.
Bryan Lynch sent over copies of all of Conor’s clinical notes, his test results and his MRI scans. They came back and told us that it wasn’t a form of Leucodystrophy, but a static disorder called Periventricular Leucomacia (PVL) which is a form of Cerebral Palsy.
That was the 2nd day our lives changed forever.
After staring down a bottomless chasm, we had effectively won the jackpot. We could now move forward and make the best of his abilities.
Little did we know that this was only the start of our battles. Battles for entitlements, battles for therapies, battles for his rights.
Conor was referred to the early intervention team in County Louth. At the start, he received extensive therapies (speech, physiotherapy and occupational therapy), however, changes in staffing and internal directives within the HSE meant that Conor did not receive any occupational therapy for long periods. His physiotherapist was a godsend and worked extremely hard with him over the years he was in the Early Intervention Team.
We were also referred through a friend to the Jack & Jill Foundation, a support charity that provides nursing care, respite and family support to families of very sick children. Their help through that time was invaluable and we will be eternally grateful.
I mentioned battles. As a parent of a child with a disability, it is enough to contend with all of the pressures that brings to bear. However, having to deal with the bureaucracy of the state and the HSE adds an often overwhelming stress. We along with many other parents have to fight for basic entitlements such as medical cards, carers allowance, Primary Medical Certificates (to allow us to buy a modified car and avail of VAT & VRT exemptions), adequate and appropriate equipment and most importantly of all the sufficient therapy (which is woefully inadequate from the HSE) to meet our child’s needs.
Where are we now? Conor is now 7 years old and lives life to the full. He is in senior infants in the local national school, Other than being confined to a wheelchair he is doing very well. However his lack of mobility doesn’t stop him doing what he wants to do. In the last year he has met Santa in the North Pole, learnt Karate, become a Jedi Knight and fought Darth Vader with his Light Sabre and has recently become a member of the local Beavers group fully participating in all of their activities.
He is a wonderful happy child who brings so much joy and happiness to all around him, particularly us as parents and his older sister.