Jackson was diagnosed with Neurofibromatosis Type 1 (NF1) in infancy; a genetic condition he inherited and one that also affects his older sister, Shelby.
At six weeks of age, Jackson had his first cold. After a routine trip to the GP, Mum Kirsty was reassured that he would be fine. Within 24 hours he was struggling to breathe. Jackson’s cold had turned into pneumonia and he was fighting for his life in hospital.
It was touch and go, but he pulled through.
I wouldn’t leave his side. He was so little and so lifeless. I thought I was going to lose my baby before I had really gotten to know him. "
This was just the beginning of Jackson’s life in hospital; he seemed to be prone to pneumonia and different chest infections.
By the time he was one, Jackson still wasn’t walking, crawling or even sitting up. Kirsty was told he was just a bit behind in his development, but after lots of physio appointments, a specialist even questioned whether he would walk at all.
But Kirsty was determined to do everything in her power to get Jackson up and walking. Each day she would do a little physio with him until he started to move on his own. She spent hours and hours on the floor with him; moving his arms and legs to encourage him to roll over.
Jackson took his very first steps at 18 months and proved his doctors wrong. Today Jackson runs just about everywhere.
While other Mothers were celebrating their children’s milestones, Kirsty was learning to read Jackson’s cues. She could tell when he was starting to get sick when he started to use the wrong muscles to breathe, and she knew the exact moment it was time to get him to hospital.
For the first three years, Jackson and Kirsty spent countless nights in hospital. But there were no answers as to why he was getting so sick.
By chance, one doctor noticed an abnormality in his breathing and sent him off for some tests. They discovered a leaky valve in one of his lungs which was causing him to aspirate. This meant anytime he ate or drank, there was the potential for some of the fluid to enter his lungs, and the cause of his continuous infections.
Surgery was on the agenda, but thankfully simply thickening Jackson’s fluids and sitting him upright was all that was needed and he simply grew out of it.
When Jackson was three, Kirsty made a passing comment to their GP that he had “chameleon eyes”. He was immediately sent to an Ophthalmologist who reassured them that everything would be fine but ordered an MRI to be on the safe side.
I went into the appointment feeling positive. It was only precautionary, and it was unlikely they were going to find anything. That was the first and last time I ever walked into an appointment to get results with such a positive outlook. "
The MRI results showed a thickening of the optic nerve and confirmed that a tumour had started growing. Thankfully, he would not require chemotherapy at this stage but did have surgery on his eyes to straighten them. It was a success and Jackson was off and running again within 2 weeks!
At just three years old, Jackson had fought for his life seven times.
One of the scariest moments for Kirsty was when Jackson had just turned 3. The family had gone to visit her Mum, but Jackson was out of sorts and trying to bite everyone. Mother’s instinct kicked in and Kirsty took him straight to hospital. On the way there, Jackson started to have a violent seizure.
As they walked through the hospital doors, the nurses rushed Jackson to a bed and Kirsty could do nothing but watch while they fetched a crash cart. At that moment, all Kirsty could do was pray.
Yet again, Jackson pulled through. However, to this day, they still can’t explain the cause of the seizure. This meant even more tests and hospital visits.
Not long after his first seizure, Jackson was rushed to hospital struggling to breathe. He had a cold and was going downhill fast. What should have been an hour-long drive, was done in 25 minutes as they sped down the highway. Pulling him out of the car, Jackson stopped breathing. The hospital became the family’s second home.
By this time, Jackson added Autism, ADHD, Sensory Processing Disorder, global developmental delay, chronic asthma and scoliosis to his list of health issues.
As Jackson reached the age of 9, Kirsty noticed Jackson was running into things and mistaking objects. Instinctively she knew something wasn’t right and hounded every specialist she knew until they had a referral for an MRI. It was then they discovered Jackson had a brain tumour – another optic glioma in the middle of his brain (chiasm).
Jackson was now having MRIs every three months to monitor the tumour growth. If the brain tumour grows or changed in any way, he would require immediate chemotherapy. However, chemo has limited success in shrinking these types of tumours. If the specialists want to do a biopsy, major surgery is required. This involves a neurosurgeon making a cut through Jackson’s skull from one ear to the other. They would then have to lift his brain to get underneath to take a sample. As you would imagine, this surgery comes with significant risk, including complete blindness.
Words cannot express how I feel. Our journey is far from over. In fact, we are just starting a new chapter of unknowns, the biggest unknown is I do not know how long I will have my two [Jackson and Shelby] babies for."
In 2017, Jackson’s previously mild scoliosis was upgraded to moderate. His spine was now at a 38-degree curvature and twisted the wrong way. It is likely he will require surgery to place rods in his spine to straighten it.
Jackson also has a heart deformity that increases his risk of having a heart attack or stroke. At some stage, he’ll also require surgery for this.
Earlier this year, Jackson received the news that he has yet another tumour that is enhanced on his right optic nerve; meaning he now has two optic nerve gliomas that are being monitored on that side.
The oncologist is very close to using chemotherapy to treat, but the truth is, responses rates to this form of therapy is limited. They are reluctant to put Jackson through it unnecessarily, so again the family simply “watches and waits”, hoping the tumours do not grow. In October 2020, the benefits have started to outweigh the risks and a decision will need to be made soon.
On top of all this, Jackson also has an intellectual disability, which means cognitively, he probably won’t develop much further than a five-year-old. Jackson struggles to make friends and is constantly picked on at school because he just doesn’t understand. He tries to befriend kids of his own mental age (5), but to them, Jackson seems big and scary. He is about to transition to high school, which presents another set of challenges as his peers start to develop into adulthood.
Jackson has a huge heart and so much love to give, but he is often misunderstood and feels alone and isolated. A Mum’s hug only goes so far and recently it hasn’t been enough for him."
Anxiety is a big issue for Jackson, and he has started asking, “Why did God do this to me? Why am I here?”. He has a world of emotion that he just bottles up and struggles to express.
Jackson has overcome so much in his short life, but every day he displays resilience, bravery and courage. He truly is a borN Fighter!