Meeting Ryder for the first time was the best day of our lives even after a traumatic and awful labour the 6th of January 2012. He was perfect his olive skin and big blue eyes staring up at us. What more could we wish for our healthy beautiful baby boy was here after a long 42 week wait and two years of trying for a baby.
On day two of Ryder’s life the nurses had noticed that his legs were a little floppy and he had no reflexes so a paediatrician came in to check him over. The paediatrician agreed and started running all these tests. Blood test reflex tests brain scans and many more. I remember one day coming back to our room after the brain scan and just crying thinking there cannot be anything wrong with my baby he is so perfect look at him.
His brain scan came back perfect later that day but we had to wait 3 weeks for the blood test results.
At three and a half weeks of age we took Ryder down to the children’s hospital to see the neurologists to get the results. It was true Ryder was diagnosed with SMA type 1 we knew nothing about this. I remember just sobbing for hours. They told us our beautiful boy may not have a very long life at all due to being diagnosed so early maybe only weeks. It was pure horror to our ears. We spent so many days travelling backwards and forwards to Melbourne only to hear the worst all the time. We met neurologists, social workers, genetic councillors, aboriginal liaison officers, paediatricians and palliative care workers. We also had palliative care workers coming to our home. At this stage I had decided enough was enough how are we going to enjoy our baby boy with so many people telling us all these things we don’t want to hear all the time, from that day we decided to give Ryder the best life we possibly could and to enjoy every moment we had with him as it was a blessing. We told him every day how much we loved him and he had endless kisses and cuddles.
Each day was another day we had made it he was such a happy boy and cheeky too. I must admit every day I still thought that the doctors had got it wrong they mixed up the results look at him he was trying to pull his back away from my chest when he was sitting on me and trying so hard to hold his head up .such a strong little boy .he loved watching chugging ton on TV and had a fascination with airplanes. He also said dadda on mother’s day. (Although it should have been mummy) He was very bright and knew exactly who everyone was and worked them out pretty quickly. Ryder was also such a chatterbox with the cutest little voice and squeal. He was growing up so fast.
Ryder turned four months old and tried his first solid we had made his first milestone I was so proud of him and he absolutely loved his veggies.
By this time we were in winter and I knew all the colds and flus were going around. We knew that if Ryder got one of these it may end his life so we sanitized our hands had all our injections as well as all the family and stayed away from anyone with a sniffle. We did so well until one day Ryder had muck behind his throat and nose. We took him to the doctors and they said it was just a cold bring him back in a couple of days if it has not gone. It didn’t go, and I had noticed Ryder’s sternum had collapsed more than usual. I thought his breathing was normal for him though as he breathed with his stomach .Ryder was refusing to eat or drink anything so we took him back to the doctors and they gave us some antibiotics. All went well that night and Ryder had started to drink again I was so ecstatic.
The next day the health nurse that Ryder loved so much came for her weekly visit and he was chatting away to her and laughing. My Nan had also been and was taking photos of him laughing at her. Within ten minutes after they had left I noticed Ryder’s lips were going blue so we rushed him to the hospital.
It was a nightmare he was going in and out of consciousness and very grey. He was getting no oxygen. They rushed him into the resuscitation area, and put oxygen on him and worked with him. I remember saying to my mum I’m not ready for him to leave me yet, he can’t go I love him. He quickly gained his colour back and I was allowed to go kiss him and cuddle him. They did an X-ray of his chest and to my surprise his spine was so bent he must have been in so much pain from it , I knew it was bad but not that bad.. He had severe scoliosis. He also had pneumonia but the doctor was positive that he would recover from it but we would have to stay in hospital for a couple of days. That was fine with me just as long as my baby was ok. He was doing great and started to feed again. Little did I know this was the start of a roller coaster. A few days later Ryder went grey again and his oxygen stopped again there was a resuss team called once again my little boy was crashing. He was rushed to another room and put onto CPap machine. The doctors told me that they can only leave him on it for so long otherwise he will become reliant on it and never be able to breath for himself as the muscles are not being used and will become weaker. That night we had to sit down with the specialists and make a plan. This also was not easy they had to take the CPap of him and see whether he could breathe with oxygen if not we had to decide what to do. We were advised that we should not ventilate him because he would become very reliant on that as well and babies with SMA do not usually make it of it, so we decided not to as we believed it was to invasive for him and cruel as his poor body had been through enough. The time came for them to take the CPap of and he did it our little fighter was breathing on his own but he had to have a feeding tube put down into his intestines so the milk bypassed his stomach because reflux was what caused him to choke the last time as the feeding tube he had only went into his stomach. That all went fine but created so much mucus the poor bub needed suction every five minutes to remove it as he had lost most of his sucking and swallowing and coughing actions just from being in hospital those 6 days. On that night we sat up all night and cuddled him to sleep he was so tired from such a big day. I cuddled him way into the morning and he groaned and groaned he was in pain somewhere and he wouldn’t take his dummy as he could not suck on it anymore. The specialist came in and said to us they were going to look at ways of sedating him because Panadol was not working and they didn’t know where the pain was. I said no very clearly Ryder was still bright and still had a smile on his face he was a fighter so there was no way.
Our little boy then decided 15 minutes after that that he had had enough he was so tired and his body was worn out he passed away at 5 and a half months in his mummies arms. I watched him peacefully take his last breath and close his eyes . He had grown his angel wings and flown away on the 22nd of June 2012. He was one of the strongest people I have ever seen and had influenced more people in the short time he was here than anyone I have ever known. I am so proud to call him my son and so proud of the fight he had given. Now it’s my time to fight SMA in a different way and raise as much money as we can to find a cure. It won’t help my baby but it may help all the other babies in the country that get diagnosed down the track. Come on Ballarat let’s get together and stand as one and raise as much money as we can for this cure.
Rest in peace bubba boy I love you with all my heart and soul
Tarnya Dudley (Ryder’s mum)