Spinal Muscular Atrophy (SMA) is an inherited neuromuscular condition that affects nerve cells in the spinal cord called anterior horn cells. Messages from the brain travel down the spinal cord, through the anterior horn cells, then along motor neurons to the muscles telling them to move. In SMA, the anterior horn cells fail to provide an effective link between the brain and the muscles. Messages are blocked or distorted. This causes the muscles to waste away (atrophy). The motor neurons affected in SMA are those which enable walking, crawling, arm and hand movement, head and neck movement and swallowing. The muscles used in breathing can also be affected. The brain and sensory nerves, which allow us to feel sensation such as temperature and touch, are not affected in SMA. SMA is a relatively rare disease that affects approximately 1 in 6500 babies born. That means about 100 new cases are diagnosed each year. Approximately 1 in 40 of us carry the genetic mutation that causes the condition.

Ethan was born on the 12th December 2010 at 12.25pm. From the moment we both saw him we fell in love. He had a very swollen face and we nicknamed him our little budha. In the following weeks we enjoyed spending lots of time playing and singing and getting to know him. Ethan started to make noises at 6 weeks and sounded like Simba from the Lion King. He communicated with his eyes they are big and sparkly and they tell a thousand stories. He smiled constantly whether tired or in pain and it melted our hearts. At 6 weeks old Ethan became poorly, he suffered from what appeared to be a sore throat, which made him struggle to feed from his bottle and he started to lose weight. We made 2 visits to our local hospital in Gateshead and were told it was just a viral infection and it would go in time. On the 27th February 2011 we decided something was not right and took him to the A&E at the Great North Childrens Hospital in Newcastle. The nursing staff were fantastic and quickly admitted him. They placed a feeding tube in his stomach to feed him up and observed him closely. The worst day of our lives was on the 1st March 2011 when a ward doctor explained that he had concerns with Ethan's floppiness and the way his legs lay in a frog like position. He arranged for a Neurologist Consultant to examine him the following day. The consultant visited and confirmed the ward doctors concerns and advised tests would be carried out the following day. The next day Ethan had the tests and we were delivered the devasting news that Ethan had Spinal Muscular Atrophy Type 1 with a life expectency of 6 months to 2 years. We had to wait a further 6 agonising days for the official confirmation. In our hearts we wanted them to tell us they had made a mistake but in our minds we knew it was true. When that final confirmation came through there was anger, tears and the question, why us?. We then decided that we didn't want peoples sympathy we wanted to make sure that Ethan had a fantastic life full of love and happiness. Ethan has been in and out of hospital since March with various chest infections but has never let him get it down. Then in May Ethan was blue lighted into hospital with severe breathing difficulties and went straight to resus with a crash team waiting for him. He was in urgent need of an IV line to administer antibiotics quick to stabilise him. Unfortunately it took the doctors 20-25 attempts and an hour and a half to find a vein for an IV line. This was extremely stressful for both Ethan and ourselves watching it, he had 3 people sticking needles in him at the same time trying to find a vein. He was stabilised and admitted to his normal ward but was very poorly. He managed to turn himself around and then crashed quite badly and was on maximum oxygen. The decision was made to send him to intensive care as they had all the correct equipment. His right lung had collapsed and he was put on a machine called CPAP (this machine is like sticking your head out of a car window at 80 miles an hour and the wind hitting you). He got extremely distressed with this and his heart rate went through the roof and his oxygen levels dropped dramatically. The decision was then made to put him on a ventilator. During the transition he was bagged (a bit like CPR) as his breathing became very erratic and we were told to give him a kiss goodbye! He made it on to the ventilator and was only given an anaesthetic and no sedative for the 2 days he was on it. He came off the ventilator on the Saturday and the x-ray showed that his lung had re inflated and the infection had gone. On the Monday he was about to be transferred to the ward and the physiotherapist requested a further x-ray as they were concerned about him. This revealed that his right lung had collapsed and his left had partially collapsed. He was basically breathing through 2 lung chambers instead of 5. We were told by the consultants that there would be no further evasive medical intervention for Ethan as it would mean that he would most probably be on a ventilator for the rest of his life so it was now time to let Mother Nature take its course. Ethan was then placed in a room, his heart rate went very low, he went cold, grey and was sweating and we were again told that they doubted he would wake up, so asked us to prepare ourselves and say goodbye! Suzanne turned him over and his heart rate went up, he opened his eyes, smiled and stuck his tongue out!!!!!!!!! Ethan had managed to reinflate his lungs by himself defying everybody around him, including his consultants, researchers and ourselves. We then experienced 7 weeks without any medical treatment it was fantastic. On the 10th July Ethan had a large plug of mucas that blocked his lung and he stopped breathing. Thankfully his Physio was here at the time and she administered CPR. Ethan began breathing again after 3 minutes and was rushed straight to hospital. An hour and a half later Ethan was up to his usual tricks of smiling and sticking his tongue out acting as if nothing had happened. Ethan is an outrageous flirt especially with the nurses. They all love him and they make any excuse to come and see him for a smile or a cuddle. Ethan was moved to St Oswalds on the 19th July 2011, on arrival Doctors advised us that Ethan's lungs had deteriated, his right lung had collapsed and his left lung was also restricted. That night Ethan deteriorated dramatically and we did not expect him to survive the night. Over the coming days Ethan was heavily medicated and spent a lot of his time asleep. When he was awake we took advantage and gave him lovely bathes, read stories and sang songs. Even though Ethan was very poorly he still made sure he gave us as many smiles as he had the energy for. We took plenty of beautiful photos and videos. Ethan continued to deteriorate over the coming days. On Saturday 23rd July 2011 Suzanne said she believed Ethan was ready and that he would pass away the next day as he was born on a Sunday, Christened on a Sunday. That night Ethan had a beautiful sleep spending the full night snuggled into Suzanne in bed. He awoke with a big smile on his face and delighted everyone that morning with his smiles. Ethan stayed alert and awake for the full morning which was rare due to the regular Morphine he was being given. After all the visitors left Ethan began to struggle with his breathing and it was clear he was tired and ready to go to sleep. At 2.40pm on the 24th July 2011 our gorgeous, brave and very courageous little boy passed away in his mummy's arms while holding daddy's hand. As he took his final breath the song 'Its time to go to sleep' came on. We will never be able to accept that our little boy is no longer with us but we are very greatful that we were able to comfort him from the second he was born to second he passed away.
Ethan will be having a final party in his honour on Friday 29th July 2011 at 10.15am. He loved Mickey Mouse Clubhouse therefore everyone attending his funeral will be wearing an item of red and a pair of Mickey Mouse ears. I am sure Ethan will be watching us all and smiling. We will never be able to put into words the love and respect we have for our little boy. He touched so many people in his short life. He taught us not to judge people or moan about trivial things, to cherrish every day and to smile each and every day. We ask that the angels take good care of our brave little boy. Mummy and daddy will NEVER forget you, you will be in our hearts, our dreams and our thoughts EVERY day, We will light a candle every night at 7.30pm for your bedtime and read your favourite stories. Sweet dreams our little angel. Mummy and Daddy love you so much. xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx