Kieran and Bailey McMillan
7 year old and 11 year old Angels
At 2.30pm on 23rd November 1993 Kieran Anthony McMillan made his way into the world and into our hearts with a wail and a cuddle. He was a happy baby, very contented and reached his milestones within the right time
and took his first step at 11 months, a bit earlier than we would have liked. Soon he was running around, playing outside with his lawn mower while Pa mowed the lawns for us at our unit and climbed in and out of his cot when he was ready for bed or to get up. We left the sides down for him, he had books in his cot and in his bath and every night I sang to him while rocking him to sleep in my arms. Then I would put him down for the night.
As he reached the age of 2 he became a nightmare of a child with behavioural problems such as stubbornness, refusal to do as he was told, constantly retaliating against us. Despite this he was also a cuddly child and always wanted a cuddle, hug and kiss from everyone.
He began kindergarten at aged 3 where he made friends very easily, especially with the girls. He was constantly invited to parties, many of which were girls but had his special friend in each kinder year that he played with at either their house or ours. He loved building towers from recycled cardboard and cried when the glue hadn’t dried and they came apart so we rebuilt them at home. As he was nearing school age he needed Early Intervention as his motor skills were awkward and the Drs were becoming concerned and thought he had Cerebral Palsy. A CT scan showed nothing but when he had an MRI scan it must have showed a similar pattern to Huntington’s Disease which his Dad was 50/50% at risk for but wasn’t symptomatic.
Due to the Neurologist at the time being very evasive it became the job of my GP I had been seeing for years to tell me over the phone it was possible he had HD but really wanted us to come in to talk to her. When Anthony finally arrived home that evening we went to her and she discussed what she had been told by the Neurologist – we were devastated. We had never heard of Juvenile Huntington’s Disease and neither had the Dr. She was as shocked as us and pretty upset, as she had known us for some time.
Kieran repeated kindergarten two years running for 4-Year-Old Kinder together with the continued work of Early Intervention Program. It was decided that he was frail and had his first seizure at kindergarten, which meant he needed to go to a special school for children with high medical needs. He was still walking when he started and was able to help the other children in wheelchairs when they dropped things or needed things; he again gained a lot of friendship into his life through his gentle manner with other children and the teacher.
As he progressed and the seizures became more frequent and medication was increasing, the school put him into a wheelchair for comfort. This made it easier to take him out as walking he would find uncomfortable with the shakes which would cause a seizure if they became too strong. He seemed to go downhill quickly, never really learning anything but other children surrounded him with love and helped him the way he had helped others. The school loved him and described him as having an ‘enchanting personality’. He loved the computer, dinosaurs and was quite good at playing games on the computer and would often tell his Nan to ‘hurry up you’re wasting time’ when she was too slow to get the game finished in time. This would make her laugh and lose the game.
Kieran Loved.. Horses Building Towers of Boxes and His Sensory Room Nov 23, 1993-Nov 2, 2001.
His Brother Bailey Loved.. Reading his Cookbook Bike Riding Hooking His Red Wagon To His Tricycle And Ride To Make Lots Of Noise Aug 19, 1997-April 29, 2009
As he lost weight with the difficulty of eating he was fitted with a peg so we had to peg feed him, he was hooked up at night to a machine which ran all night and medications were given down the tube also. We had many trips to the hospital for various things but on my birthday when we had a lunch planned out I had a call from the school to say Kieran was crying with pain and they felt he needed to go to hospital as they hadn’t seen him like this before. We took him in and hours later he was transferred to the Kids Ward where he became more tired each day. Friends visited and read him stories, teachers and aides from school called in and the Pediatrician ended up putting a halt on so many visitors. His room was decorated by paintings from his class friends they did for him and soft music was playing for him. The teacher held him in her arms and sang school songs to him and that night we were called in during the night to say his breathing had changed. We rushed into the Ward and stayed overnight but not sleeping, jumping every time we heard footsteps nearing us. We sat with him the next day and went for breakfast and lunch, by this time everyone had gone. He had asked early in the day for his little brother Bailey so he was brought in where he noted that everyone was crying. Bailey was taken back to Kieran’s school with Kieran’s teacher and he told me that night that the teacher had her hands over her face at school and someone was cuddling her. When everyone had gone Kieran’s breathing had changed again and the nurses asked if I would like to hold him, I said yes. I held him in my arms for half an hour and his Dad and I were left with him, the nursing staff checking his heartbeat every now and then. Finally he had gone, precisely at 3pm when school finished for the day on Friday 2nd November 2001. He now rests with his younger brother in the Lullaby Gardens next to a pond where ducks and ducklings wander around and a dolphin statue stands guard.from his loving Mummy and Daddy.
We lived in a court so when my parents drove off they had to drive around the court and come back past the house. Kieran would be jumping up & down laughing on the lawn as Dad would slow down the car, wind down the window & at the same time Dad would be calling out ” you’re a dill Kieran” Kieran would be jumping & laughing calling out “you’re a dill Pa” – Dad would be laughing so much and then they would drive off. It was a special thing between them, they were very close. Dad died nearly a year before Kieran – I don’t know how he would have coped with seeing Kieran dying. I really don’t.
Bailey was called lots, I called him Bailey Wailey, Bais, others called him chocolate dribble monster and cheeky monkey.
So I guess the final ruling is Kieran the Kinder Kid and Bailey Wailey.
– Debbie Bailey and Kieran’s Mom
7 Replies to “Kieran The Kinder Kid and Bailey Wailey”
i am so very sorry for your loss i also have juevinille huntingtons
My heart aches for you. My son Gabriel (6) was just diagnosed 3 weeks ago with JHD. When I read your story, it reminded me of Gabriel. I would trade so Gabriel does not suffer. From one mother to another, my heart aches for you. Sending lots of love your way
Thank you Whitney & Tristin. I am so sorry to hear Gabriel has JHD, it’s a long & painful journey for everyone & I thank Jacey for this remarkable site she has created.
Deb I am constantly inspired by your courage and determination, no words can express the sadness I feel for you and you are often in my thoughts. Ann
I never knew Kieran but is he was anything like his ratbag brother then what a handful you had! beautiful boys, both dearly missed for sure………not sure if you saw debbie but i posted another pic of bailey today, cheeky chocolate smile while swinging…….
Thanks Ann, you too are going through so much pain & I often think of what you are experiencing. Yes found the pic Zoe, Kieran wasn’t as full on but his behaviour was out of control due to jhd. I believe if they didn’t have jhd both boys would have been much easier to handle but Bailey was certainly much more confident.
You should write a guide on this. I’d be a buyer right away.