Posted August 25, 2014
TOMMY DEAN'S STORY
Tommy, Taken Too Early to be Our Angel In Heaven! 29/04/02 - 24/08/10
Our Beautiful Son Thomas Lachlan Dean was a Healthy, Happy, Gorgeous Boy who was loved by all who knew him. He was certainly a very healthy weight and height for his age group. To look at him you would not of known that he was to be a victim of this lethal Genetic Mutation Lpin1.
On Monday the 23rd of August 2010, Tommy woke up with slightly sore legs. He had slept over at his best friend’s house that weekend and had had lots of fun wrestling, playing lots of sport, playing X-Box and staying up late with his mates watching movies. I just assumed he had over done it at the party and didn't think too much into it. I checked his legs and there were a few little bruises on his shins. I gave him a big cuddle and asked him if he wanted to stay home from school. He said he would be OK and insisted on going to school. We only live across the road from his school but I was a little worried and I offered to drive him to the front gates. He still wanted to walk to school so I watched him walk then I drove to work.
When I arrived home from work at 5.30pm he greeted me at the door telling me his legs were sore. I gave him cuddles and again checked his legs. He said they felt sore. When I told him I was taking him to the Doctors he then told me his legs were now OK. Tommy's Daddy Matt and I discussed the situation and we thought maybe it could be growing pains or maybe he took a knock to the legs in wrestling and they were still sore. He happily played the Nintendo Wii with his 3yr old brother Oliver, had dinner, had a bath, read his home reader then went to bed. At this point we had no idea what was about to happen to our little man over the next 24hours.
at 7.45pm on Monday night, Thomas hopped out of bed and came into the lounge room crying. He was saying his legs were really really starting to hurt. He even told us he wanted to go to the Doctors. He couldn't put full pressure on his legs. I told him that Daddy would take him to the hospital and the nice Doctors would give him some medicine to bring home and everything would be fine- little did I know this was the last time I would see my little boy alive.
I got a phone call from Matt telling me that the hospital had said it was just a slight infection that had got to his bones and they wanted to keep him in overnight to monitor his pain levels as at that point they were a little concerned that the pain relief they had given him didn’t seem to have any effect on his pain. Matt was then told that Tommy would be fine and that he could go home in the morning with some antibiotics.
Matt stayed at the Hospital with Tommy. I really wanted to go to the hospital to see my little man but by this time it was after midnight and Ollie was sound asleep in bed so I thought I would just take the next day off work to spend at home pampering Tommy. I could not sleep all night. I wish I had gone with my own gut instinct and woken Ollie up to go see how Tommy was doing during the night.
The next morning, Tuesday the 24th of August, I dropped Ollie off at Daycare and drove to the hospital thinking I would be taking my little man home. When I was in the hospital car park I received an alarming phone call from Matt, he was crying and I couldn’t understand what he was saying. I heard him say Emergency ICU, ICU! I ran to the Emergency department and the lady at the window rushed me to the ICU rooms. There was my little man lying on the big white hospital bed unconscious. He had suffered a Cardiac arrest and they were working on him.
My husband was as white as a ghost and was in total shock as was I. We could not understand how this could of happened. We prayed and prayed our Son would wake up but it was too late. The Doctors had young students work on Tommy for 5 hours to try and revive him. Our Son had passed away and we didn’t even get to say good bye. I wish I had been by his side the whole time, holding his hand and telling him how much I loved him. The poor little thing would of been in sooooo much pain but we didn’t pick up his cries for help early enough.
We hope that the tragic loss of our Beautiful Son Thomas Lachlan Dean can maybe help make other families and Doctors aware of this rare Lpin1 illness and hopefully now they may be able to do further research on this disease to help save lives.
The main symptoms we now know to look out for are: sore legs, sore limbs, sore joints, muscle aches, no control of the bowels, very dark strong smelling urine, bad breath, lethargy, bruising on legs and pins and needles in the feet. If these symptoms seem to sound familiar please take your child straight to the hospital and demand they do urgent testing for electrolytes, K, CK, glucose and make sure they test their Urine myoglobin levels. Tell the doctors to do all the relevant testing for severe or rapid rhabdomyolysis.
If you feel you can help contribute to the Shine for Thomas Foundation, we would really love to hear from you. We really want to get the awareness out there so hopefully we can help save lives. Our Children are just sooooo precious so what ever it takes we will try to make ourselves heard.
Thank you for reading this, we would be so very grateful if you could please pass this story on to all your friends to read.
Sending Much Love, Great Health and Happiness to you and your loved ones,
xoxo Kam Maree Dean xoxo