Kyran is our miracle baby.
He is loved by so many.
Kyran is the youngest of four. He is our miracle as he is not only the first baby boy in our family, but the last male to carry on the Dunlop name.
He loves his sisters, they make him smile from ear to ear.
Kyran James Dunlop was born on the 22nd of November, 2016. After a complicated pregnancy, it was a last minute decision for Kyran to be delivered via C-Section. After 2 long nights in intensive care, we were finally able to bring our little bundle of joy home! Our whole family was ecstatic to finally have a baby boy! He was a healthy and happy baby, feeding well and hitting all his milestones!
At 3 months, Mum started to notice that Kyran wouldn’t latch properly when breast feeding, particularly on one side. At first it was thought that it was just his positioning. Then, at 4 months, Kyran started on solids due to his reflux. He started on rice cereal like most babies, but he had trouble sitting in the high chair and needed to be constantly propped up.
We started to notice that he was not doing some of the things he should be, like rolling and holding his head up while on his tummy. Because of his reflux, Kyran didn't spend much time on his tummy and we just thought he was a bit behind because he didn't have enough time in other positions. At this point, everything was going well with no real concerns.
At 5 months old, Kyran’s weight was steadily declining on the child health growth charts. He started his life in the 95th percentile and at this point he was sitting on the 50th percentile. We started to introduce more solids to help increase his weight, but the reflux kept making him vomit his meals up; his food had to be a thin puree consistency for him to tolerate. At this point, we commenced doing monthly weigh ins at the GP.
At 6 months, Kyran had his first taste of yoghurt. After only 1 teaspoon, we stopped because clearly he didn't like it. Ten minutes later his bottom lip blew up and we rushed him to hospital. Kyran had an anaphylactic reaction to dairy; which was later confirmed via skin prick test. This started our hospital appointments. And we found out soon after that he was intolerant to soy also which made his diet extremely difficult.
Kyran had now became known by speech pathologists, dieticians and physios at the Caboolture Hospital, North of Brisbane. He was then referred to Child Development Services (CDS) where they assembled a team to help Kyran to start meeting his milestones.
At 7 months, we noticed Kyran becoming more and more irritable. He still was not rolling or sitting and was having muscle spasms; he would get cranky and tense all his body. It was increasingly harder to keep him happy and was always wanting to be picked up in up-right position.
The Paediatrician organised a head ultrasound. The result was scary, it showed extra fluid on one side of the brain. The Paediatrician sat my Mother down and said they needed to do more investigations including an MRI at Lady Cilento Children’s Hospital to help get some answers.
At 8 months, Kyran’s CDS (Child development services) appointment showed delayed development; as Kyran was showing as though he was only 3 months of age. He seemed to have no gag reflex which became alarming as we didn’t know if he was able to swallow properly.
Kyran went for his monthly weigh in to have only put on 10grams in the previous 4 weeks. He still did not have proper head control and was quite limp in the body. We described it like his head was with us but his body wasn’t attached.
He was still not able to sit in a high chair without props and seemed to be going backwards with his solid feeding. He found it hard to get food down and he consistently coughed and choked. Breastfeeding continued but Mum noticed he would not latch as well as earlier on. At the next CDS appointment the speech pathologist advised us to go to Caboolture Hospital and find out what is happening with our little boy. So we did!
Mum & Kyran spent two weeks in Caboolture Hospital where our little boy went through a variety of tests. Upon admission the doctors inserted a nasal feeding tube and started to administer Gastralyte to get his fluids up. On the second day in hospital, Kyran developed Influenza A.
Initially, we went into hospital with a baby who was having feeding and weight gain issues, but now we were fighting Influenza A as well.
This was only the start. Little did we know he would go on to have multiple reactions to different formulas. He had to stop breastfeeding as the doctors were not sure if the breast milk was causing him more reactions. Kyran’s gag reflex wasn’t working properly. Meaning he doesn’t know how to swallow properly which can be potentially fatal as he does not understand if he is choking and the reflex is not there for him to cough it up. The doctors then prescribed Neocate, a hypoallergenic formula. Which we continue to administer via the feeding tube daily.
Kyran’s muscle spasms were becoming more prominent and his discomfort was very clear. Doctors were very concerned and told us that we needed to prepare for any outcome. We needed to get to Lady Cilento Children's Hospital (LCCH) for specialists to see him and to have an MRI but beds were limited.
Kyran then had a lumbar punch (also known as a spinal tap) to get specimen as well as multiple blood tests in the hope we could get a diagnosis. It was extremely heart breaking for my mother to be in the room while her baby was screaming in both fear and pain.
Finally 2 weeks after arriving at the Caboolture Hospital, we finally moved to LCCH. Kyran had to go under general anaesthetic to have his MRI & eye test as well as more blood tests done. Our poor little boy had trouble breathing in recovery as a result of his recent virus. The results of MRI were heartbreaking - It showed the white matter in his brain showed a variance in shades; which suggested brain damage.
The doctors had an idea of our diagnosis but needed more tests. And these specific blood tests and they needed to be sent to South Australia for testing. Somewhere in amongst all this chaos, Kyran contracted MRSA staph infection.
The next week was spent trialling a cocktail of pain and sedative medications to help ease Kyran’s pain and help him to sleep more comfortably with a limited number of muscle spasms through the night.
Finally the test results arrived and we had a family meeting with the Head of Neurology, Metabolic Professor, Head General Paediatrician, Social Worker and our Head of Ward Nurse. It was extremely confronting for my mother and Cole to walk into this meeting. They went in hoping for a miracle, but unfortunately our family’s worst nightmare had become a reality.
Kyran has Krabbe disease (pronounced Krab-bae disease) also known as Globoid Cell Leukodystrophy. It is an aggressive, degenerative disorder that attacks the nervous system. It’s a life limiting, debilitating and devastating disease. It is caused by the deficiency of an enzyme called galactosylceramidase. This enzyme deficiency impairs the growth and maintenance of myelin, the protective covering around certain nerve cells that ensures the rapid transmission of nerve impulses.
Krabbe disease is inherited and symptoms usually begin before the age of 1. Initial signs and symptoms typically include irritability, muscle weakness, feeding difficulties, episodes of fever without any sign of infection, stiff posture and slowed mental and physical development. As the disease progresses, muscles continue to weaken, affecting the Kyran’s ability to move, chew, swallow, and breathe. He may also suffer from vision loss and seizures.
It’s a 1 in 80,000 chance to inherit this disease however if both parents are missing a certain Chromosome, it’s a 1 in 4 chance. Currently, there are 15 families across Australia struggling with this disease, we are 1 of 3 in Queensland.
In older children and adults, the course of the disease can vary greatly and have had some success with stem cell transplants. However for babies, the life expectancy is no more than 2 years old with no known cure for those who have been diagnosed; Kyran is now 9 months and well advanced in the first stage of this disease.
We are going to lose our Miracle Boy in a few short months - Our lives have been destroyed.
We want to enjoy our time and make as many incredible memories as with Kyran. Not only for his Parents, Cole & Carissa; but also for his older sisters Grace, Tenae, myself (Tamieka) and our incredible support network of family and friends.
Cole is an interstate truck driver which requires him to be away from home at least 5 days in every week. He has had to give up work to not only look after my younger sisters aged 5 & 3 and support our family but to help with Kyran’s around the clock medical care.
Donations are incredibly appreciated and will go towards the medication and care that Kyran requires as well as cover some family expenses to allow Cole to stay at home. We want to be able to make as many beautiful memories as possible in this devastating time and make Kyran feel as though nothing has changed.
- Tahlia O'Connell
- Erin Mampana
- Nick G
- Keith & Ann Smith
- Jessica Smith
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