Leukodystrophy Resource and Research Organisation Inc. | Incorporated No. IA41033

Personal Stories

 

Brendan’s Story

On the 7th of March 1988 our only son Brendan was born. As he struggled into this world little did we realize that some 11 years later he would again struggle – this time to leave it. He was born blue eyed and blonde haired and this most cherished of sons to Bob and Ann made a wonderful brother for his sister Emma.

Brendan grew and developed as all healthy children do. The first we saw of his incredible fighting ability was when, as a baby, he was hospitalized with a severe case of pneumonia. He fought and won that battle. The absolute joy that is unique to parenthood filled our lives for a second time.

Brendan and Dad

Brendan and Dad

Brendan entered preschool and after settling in it became apparent that he was very intelligent. He was a typical fun-loving boy and we relished our games of cricket in the backyard and the making of cubby houses for him to explore.
Our first real concern came when he had occasional fainting spells whilst playing Under 10 cricket at the age of six. We put it down to heat and nerves.

Brendan proved to be a talented cricketer and only his occasional spells of “absentness” prevented him from taking out the cricketer of the year in his first season. His hero was Shane Warne who was destined to play his part in Brendan’s very short innings.

Emma and Brendan with Shane Warne

Emma and Brendan with Shane Warne

At eight years old we moved to Hervey Bay. The alarm bells soon sounded as he resumed both his schooling and his cricket. He had lost his attention span and his schooling nose-dived because he could no longer perform in any subject. His cognitive skills seemed to have suddenly and inexplicably deteriorated. Special tuition was unsuccessful. Many visits to doctors by his Mum Ann occurred.
Despite an armful of evidence by way of school reports, explanations, demonstrations of irregularities we remained without a reason for his rapid decline.

Brendan was misdiagnosed under the convenient umbrella of ADHD. When the resulting medication proved ineffective we finally found a doctor who would undertake a series of pathology tests including a CAT scan.

As we held Brendan still during his scan we knew something was terribly wrong when they called for the dye. He was sent to the Royal Children’s in Brisbane for the result to be interpreted. The waiting period of some five days before we could see the specialists redefined the meaning of hell. The diagnosis was given on the 10.11.1997 – he had Adrenoleukodystrophy and would probably die in nine months.

Brendan - Ever Our Brave and Champion Mate

Brendan – Ever Our Brave and Champion Mate

By this time he was already seriously brain damaged. Our time was then spent caring for him as he lost all his faculties. Throughout his illness he laughed until unable and rarely cried. The explicit details of this most horrible of diseases would take a book to relate.
He spent most of his time at home and only went to hospital in times of crisis.

At 8.30 am, on the 17th of July 1999, Brendan died in my arms.

Brendan’s story has taught us a great deal. It highlighted the enormous stonewall that is being put up by some doctors and targeted at the most wonderful of beings – a Mother. The change from ignorance to arrogance is so very small.

It has taught us to be resolute with the medical profession for there are many wonderful, caring and knowledgeable doctors.
We learned the inestimable value of establishing the largest network of related people possible to help you survive this terrible journey.

The ULF and related medical experts, and most of all, affected families who are willing to share their experiences were the best lifelines.

We will always treasure the joy and wisdom that Brendan gave us and he will always be our Champion Mate.

Bob, Ann & Emma Wyborn


Branford Mother’s Story

Branford mother continues push for ALD screening with patience and passion.

BRANFORD – When we first met Jean Kelley, she was pushing for a new law to require newborn screening for adrenoleukodystrophy (ALD), the devastating genetic disease that took away her young son’s ability to talk, move or feed himself. [READ MORE from foxct.com]