Dion with his feeding machine "Charlie"
Dion was a surprise package from day one. I thought that I was having another girl but out came a beautiful little boy with red hair.
I could not breastfeed either of my children due to having no milk so Dion went straight onto the bottle. He was classed as ?A lazy sucker? and would only drink half of his milk quota and that was pushing it.
As time went by his milestones were a bit behind but nothing to be worried about. Every second Thursday I would take Dion and my daughter Erin to see our local health nurse to get them weighed. It was on one of these Thursdays the health nurse mentioned to me that Dion had not gained any weight in eight weeks and suggested we see paediatrician and have him checked out.
Every test came back normal or negative
As there were no obvious reasons for his lack of weight gain, along came the rollercoaster of a food diary, blood tests, x-rays and ultrasounds to find a reason. Every test came back normal or negative. At this stage Dion's weight was just under 7kg at 11 months of age when the average is between 8kg and 12kg.
Dion virtually stopped eating all together and it became such a battle between us that we hated the sight of food. He would cry and I would think ?here we go again!?. I had so many people trying to give me advice on how to feed him that I stopped trying to talk to them. Didn't they think I had tried everything to get my child to eat?
Dion's weight was so low it was decided to put him straight into hospital for nasal gastric feeding to get his weight up. This was done via a machine that ran formula through his nasal tube and down to his stomach. After so many battles, I think a feeling of calmness and relief finally fell between us when I decided to stop trying to feed Dion orally and concentrate just on his machine.
The length of our hospital stay was determined by how Dion handled the feeds. This was not an easy task as he kept being sick. Dion was introduced to our dietitian who tried him on a number of different formulas. He slowly started to gain weight and we were allowed to go home the day before his first birthday after spending 14 days in hospital.
I had terrible thoughts that he would be taken away from me
It was a scary two weeks as no-one knew what was wrong with him and I had terrible thoughts that he would be taken away from me. I couldn't feed him and felt as though I had neglected him.
I was shown how to work the feeding machine which we took home, so he could continue with his daily and overnight feeds. We named the feeding machine ''Charlie? and it has since been a constant fixture in our lives. Dion is now fed via ?Charlie? three times a day for two hours at a time.
Dion was in and out of hospital every month for one reason or another. In September 2007 he became so sick and lethargic that we stayed in hospital for seven weeks.
Everything that went down his nasal-gastric tube came straight back up. The nursing staff would hand me up to 12 towels per day to catch everything that was coming up and still no-one knew what was wrong. He was losing more and more weight and I was very scared we would lose him.
Dion finally had surgery to place a Gastronomy button into his stomach so we could feed him directly through it. At the same time they decided to perform a fundoplication. This is where the stomach is twisted around the oesophagus to stop anything coming up through the throat, so he could never vomit again. He finally stopped vomiting and began to gain weight so we could go home.
My husband and I thought the scan would come back normal
He went back into hospital over New Year with a tummy bug so the doctors decided to do an MRI while he was in there. My husband and I thought that the scan would come back normal just like every other test and scan he had had. How wrong we were.
Our Paediatrician rang our room and said that the MRI had come back abnormal and he was on his way in to talk to us about 'Leigh's Disease'.
Leigh's disease is a rare inherited neurometabolic disorder that affects the central nervous system. It is a mutation in the mitochondrial DNA from both my husband and I. As this disease progresses Dion will lose muscle tone, forget how to do things such as talk and move which will then affect his organs until they start to shut down. Eventually he will forget how to breathe and end up on a ventilator until we decide it is time to say goodbye.
We didn't know what to say or to think but knew that our lives had been changed forever and cried many rivers of tears. We learned that this disease is terminal with no medications, operations or cure. I still remember the feeling of what felt like my heart breaking and thinking we had to start planning his funeral straight away. The range of emotions we went through that day were amazing. Guilt was a big one as was the question ?why us, why him??
We were told we should not have any more children
It was quite hard to try and carry on with life and continue with some normality knowing he was going to die. Dion had to have a muscle, liver & skin biopsy to confirm the diagnosis. After 12 weeks of waiting, the tests results came back and we were introduced to our geneticist who told us the grim reality of Dion's life. We were also told we should not have any more children as the chance of another child with this disease was a 1:3 chance.
Many specialists came to offer advice, support and information on this disease.
With Dion's strain of Leigh's Disease the expected age of death is anywhere up to six or seven years. He will turn three in May.
Dion's big sister Erin (4.5) knows that her little brother is sick but not to the full extent. She just knows he can?t eat like her and in her words "he has a sore head on the inside". The amount of time we have spent in hospital has been tough on her but we have had wonderful family support and she has been well cared for and loved.
Someone once asked me if I felt angry that an MRI hadn't been done sooner but the answer is no. It had given us 20 months of not knowing my little boy was going to die.
I know will never get to that stage in life
It is sometimes hard to watch family and friends' children growing up and running around as I know Dion will never get to that stage in life. Dion does not eat at all. Nothing oral except water and very occasional times he will have a few teaspoons of baby yoghurt. As of this week he now weighs 11.62 kilos. Still not the best but has made it to the 3rd percentile line.
He cannot walk but can crawl and can talk enough that we understand. He does manage to annoy his sister and they fight just like any other siblings. It is these moments and memories that will keep us going.
We don't really know what is in store for Dion. We don?t plan too far in advance but we have been told to give him the best quality of life we can, so I take him out everywhere and give him as much normality in life possible.
These are the times that will stay with me forever and I will give him and us as many fun memories that I can.
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