In the early hours of 18 July 2009 our second child Tate entered the world. My husband, Jason and I felt complete. It was already a special day, as it was Tate’s older sister Sienna’s second birthday, a very special bond they will share forever.
Tate was such a beautiful, happy baby. He had the ‘old soul’ look about him and seemed so content. Around four months of age we noticed Tate wasn’t gaining a lot of weight and fussed a lot at feeding times. I didn’t really think much of it, changed his formula and that seemed to fix the problem.
At a check up, our paediatrician felt Tate was very ‘floppy’. He was also concerned about Tate’s weight gain or lack thereof. He also thought he noticed whilst examining Tate, that his eyes were rolling back, as though he was having little fits. This was crazy I thought! I didn’t think there was anything like that wrong with our little guy, but to be on the safe side he referred us to a neurologist. After his examinations he also felt there was more going on and Tate then had an EEG. The results came back as ‘no seizure activity’ and that was a little bump in the road…or so we thought.
Tate then continued to gain weight and started crawling, providing us with so much joy and happiness. He simply adored his sister and she was the source of his entertainment.
18 July came around again and we celebrated Tate’s first birthday and Sienna’s third birthday. It was a fabulous day. One that we went overboard with but I don’t regret a bit of it now, knowing that it would be the only birthday party we would give Tate.
He now was so close to walking, pushing his Tonkas around everywhere and cruising around the furniture. You would have never known that Tate struggled to put ON weight – he was easily a two bowl of pasta boy at dinner time and simply loved his food.
On 2 November 2010, our lives changed. Tate had had an ordinary day, big dinner and a splash in the bath with his sister. Once we put him to bed, we noticed he was making strange noises, not crying or upset just odd. After going into his room and getting him up, Jason noticed his head was off to the side and his little hand was rubbing his chest. Something was wrong…
We had never seen anything like this, was he fitting? What did that look like? We rushed him to our local hospital. He was now having seizures down the left hand side of his body. We were told they would try to stop the seizures there, if not he would need stronger medication which would require him to be intubated as it affects the breathing. The next few hours were a blur…healthy child one minute, next minute seizing, being intubated and now rushed in an ambulance to PMH into the ICU unit… WHAT WAS GOING ON!!!
After forty eight hours and a truck load of medication the seizures were under control, now our questions began. Why has this happened to our little boy? The answer…. We simply don’t know, we are doing every test under the sun and they are all coming back clear, we are hoping it’s just a nasty infection and this is how his body was fighting it…Tate had MRIs, CT scans, lumbar punctures, EEGs and numerous bloods taken.
After a week in ICU he was stable enough and we were transferred to the ward, still without a diagnosis. Our once smiley, happy and babbling boy now had no head control, no muscle tone, struggled to open his eyes or say anything and was being fed through a nasal gastric tube.
The day we were waiting for but also dreading had come. Three weeks after this nightmare began we had some answers. We were informed that in ICU Tate had some bloods taken to test his POLG gene. He had come back with two mutations, one that is commonly seen in a mitochondrial disease called Alpers’. The second mutation had not been seen by anyone before, but was very similar to another mutation that is also seen in Alpers’ disease.
So Tate was diagnosed with Alpers’ disease, with no liver involvement.
So many words in the previous sentence we had never heard of, let alone understood. The next few weeks were just about trying to get information to educate ourselves about our son’s very rare, yet brutally fatal disease. At this point I had found out that – 80 per cent of children with Alpers’ don’t see past a year of their diagnosis and the rest may live till three years of age, and no more than their first decade of life.
I also learnt that it was a positive thing that Tate didn’t have any liver failure yet, as once the liver is involved, it generally means you are in the last stages of this devastating disease.
After seven LONG weeks we were finally discharged just in time for Christmas, although Tate really hadn’t made any improvement. I was educated in doing his meds and feeds, so why stay in hospital?!!
Long story short, Tate ended up back in hospital on 20 January 2011. With the symptoms he was showing there was now concern that his liver was being affected. The tests were done and he was in the early stages of liver failure. I cannot express the actual feeling of our hearts breaking at this point, we didn’t know how long we had and there was nothing we could do for our little boy. Making sure he was comfortable and pain free was my only priority.
With knowing Tate’s fate, but not knowing when, we decided to take him home on 2February. We spent two lovely family days at home, just snuggling and being together. Sadly, Tate passed away, very peacefully in our arms on 5 February 2011. Just three months and threedays after being struck by this disease.
We feel so robbed of our time with our little boy, 18 months on this earth is not long enough. As a family we are still grieving but are determined to help others with mitochondrial disease and to promote awareness and knowledge, so no family has to go through what we have. The loss of a child, brother or sister…it’s just not fair.
Marika and Jason Glover