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The Annabelle Rose Foundation for Spinal Muscular Atrophy

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helping those who need it most


Lucas was born 4th August 2008. He was our second baby (we already have a little boy called James who was 2  at the time). We had 8 amazing weeks. Lucas was such a sweet natured baby. Very different to James but then “they’re all different”. We put our ease down to experience and that we were already used to broken sleep and routines! I had noticed that Lucas couldn’t support his head like James could. But he was still so little and had been born a week early by elective caesarean. Lucas had passed all his health checks and I wasn’t concerned at all.


It wasn’t until we went for Lucas’ eight week check, that the GP expressed some concerns. He was puzzled - Lucas was thriving but he was very weak – he called it Hypotonia – and also noticed that his Moro (or startle reflex) was absent. I knew the reflex was present when we left hospital; I watched them check it and I remembered it from when James was a baby. The GP wasn’t overly worried but he wanted us to see a paediatrician as he had never seen this before.


I left feeling slightly concerned but when I got home and started to look on the internet at possible causes for the symptoms, I could see they were only a result of very serious conditions.

That is when it first hit me that Lucas was very ill. We paid to see a consultant privately. Still hopeful, we went armed with photos of Lucas lifting his arms and kicking his legs in the bath. He wasn’t this weak when he was born – surely physiotherapy would help him grow stronger.


The consultant was lovely. But there was still no good news. He wanted us to see a neuromuscular specialist as soon as possible. He worked with a doctor at the Leeds General Infirmary (LGI) and he offered to speak with her immediately to arrange an appointment. His parting words to us were, that Lucas was very ill, it was almost certainly genetic and there was nothing we had done to cause it. We were absolutely devastated and yet we didn’t know then how bad things were going to get. We saw the private consultant on the Friday evening and we were at LGI for tests the following Wednesday. We left LGI still hopeful – at that point nobody had said the words Spinal Muscular Atrophy (SMA) or even suggested that Lucas’ condition could be fatal. All they would tell us was that a DNA test would determine if it was the condition they suspected. They would not tell us anything further until the results were back; this could take up to 6 weeks but they would push for the lab to do it in 2.


We went on the internet again, when we got home, to see what we could find out, as the hospital were so adamant that they would not tell us what they were testing for. This is when we first learnt about SMA. I’d previously dismissed anything genetic – Steve and I were fine – how could we be carriers of such a serious genetic disorder? It took three different websites about SMA for it to really sink in. As I read through the parent stories on the Jennifer Trust website, they described our baby Lucas over and over again. The” beautiful, bright smiles and expressive faces”, “short breast feeds”, “severe hypotonia”, “exaggerated breathing”. Lucas had it all.


I remember it was a beautiful bright sunny day in October. My mum-in-law was with us, looking after James. Lucas was fast asleep in his baby chair, worn out from all the hospital tests. All I could say was “My baby is going to die”. I can see it so vividly as if it was yesterday. I fell apart for a bit after that. I was functioning but I couldn’t eat or sleep or think. I knew what I had to do and what was going to happen. I’d read it over and over on the Jennifer Trust website. It just hurt so much to try and even begin to cope. It was a point of limbo – we knew what it was and yet the NHS would give us no support until it had been confirmed. All of a sudden Lucas was really starting to deteriorate, he was really struggling to feed and there was nothing I could do. It took me a week to contact the Jennifer Trust. I was going out of my mind and it was then that I spoke to Claire – who later became my outreach worker. She was so calm and understanding- so empathetic. There was nothing they could do officially until we got the results but I think we both knew what they would be. She explained what they could do to support us in the event that it was SMA and put my mind at rest about James and that it was impossible for him to have the condition as he was now too old. In the end it took just over week for the results to come back and on 17th October 2008 we were officially told that Lucas had Spinal Muscular Atrophy type 1 and he probably only had 2 months to live.


That same day we went to our local hospital, Airedale General (where only 10 weeks earlier Lucas had been born). This is when we met Dr Britland and our medical support got so much better. Lucas was fitted with a Nasal Gastric (NG) feeding tube and Steve and I spent the next few days learning how to feed Lucas with an electric feeding pump. That very first night we left Lucas at the hospital. The staff thought we should go home and get some sleep as it had been such an exhausting few weeks. Leaving Lucas that night was as hard as any of the ordeal so far. Never again would he leave our side and from that moment, either Steve or I were always with him. As soon as Lucas had his NG tube fitted he started getting better. I certainly started feeling better too. All of a sudden we were caring for our baby and actually doing something that made a difference. It was staggering the amount of equipment that was available to us and also the sheer volume of milk and feeding equipment that was required. I dread to the think of the cost to the NHS. The first week we returned home from hospital we were flooded with visitors. We felt like local celebrities everyone seemed to have heard of Lucas Hannigan but for what felt like all the wrong reasons. Physiotherapists, palliative nurses, the community nursing team etc. It was so overwhelming. They talked of morphine and suction machines, the threat of a cold and the need for a care plan. I rang Claire at the Jennifer Trust and she helped answer the questions that all these visitors had left us with.


The week after, we asked to be left alone; from that point on we only wanted to deal with Dr Britland and the Jennifer Trust. Dr Britland walked us through the care plan (the document that outlines to the emergency services and any other doctor that Lucas may come in to contact with, how we wish for Lucas to be cared for and what to do in the event of a change in his condition – such as the need for resuscitation) . It seemed so surreal that we were asking doctors to not resuscitate our baby. But it was so important to Steve and I that Lucas retained his dignity throughout his short live and that he should be able to enjoy his time (however short that may be) without intrusive medical intervention or the prolonging of his suffering. We knew there was no cure for SMA and I think that gave us the courage to make these decisions for him – however heart breaking.


Lucas was well for the next 6 weeks. We felt safe in the 3 hourly feeding routine. The NG tube showed the world that he was special and we even dared to plan trips away to London and Scarborough - trips that we unfortunately didn’t get to take. We wanted to fit as much in to Lucas short life as possible. The Jennifer Trust leant us the most incredible sensory toys for us to play with, with Lucas. He loved light and colours and would lie for ages watching the spinning patterns that the projectors would make on the walls. Hence the Television was also popular – much to James’ delight too!



As important as our need to care for Lucas was, our thoughts we also constantly with James and how SMA would affect him. Again Claire at the Jennifer Trust was able to help. She put me in touch with the parent of a baby who had also suffered with SMA type 1. She was called Judith and she had, had a child of James’ age when her second baby was born with SMA. It was such a comfort to me to hear how their family had coped and were still coping almost 10 years later after the death of their baby. I think I should quickly return to James at this point in this story as he played such a big part in being the most amazing brother. He never questioned why we had to spend so much time looking after Lucas and he was never jealous of the attention that Lucas got. He helped us to set up Lucas’ feeds, and at the times when my heart was breaking and I simply couldn’t smile, he entertained, Lucas and I with a dance or a story. We often took James and Lucas to church and we had them Christened together– a very beautiful day. This helped us explain that when Lucas died, he would go to heaven and also helped James to understand about Lucas’ funeral.


Lucas' story in his mummy's words.....

lucus 1 lucus 2

All of a sudden at the end of November, Lucas fell ill. After a week in hospital, suffering with a bad cold, Airedale hospital arranged for an ambulance to take us to Martin House, our local Children’s hospice. Lucas was on oxygen at the hospital and had received physiotherapy for his chest congestion. We had even learnt to use the suction machine. We had planned a visit to Martin House that week anyway but hadn’t expected Lucas to be hit so hard by a cold. He had managed to cope really well with bugs up to that point. But this time it had really weakened him. Airedale Hospital were so amazing at looking after Lucas, but Martin House was able to give us the space to enjoy being a family, whilst also caring for Lucas. Our last two weeks with Lucas (and the week we spent there after he died) were filled with the most amazing colour and light and I don't think we can every properly thank the people there for making the most difficult days of our life so perfect.


When we arrived we were told Lucas had only days to live. His dazzling smiles were gone and he looked pale and tired. Lucas was given morphine to ease his breathing and to everyone’s surprise steadily started to improve, he even came of the oxygen and his smiles returned. We celebrated James’ third birthday and with the run up to Christmas there were many tree’s to decorate and kids for James to play with – he had a ball. After 2 weeks we started to talk about going home and planning again for a Christmas at home. Then Lucas died. Throughout his journey, Lucas had made so many decisions for us at times when we didn't know which way to turn. Lucas brought us to Martin House. He chose to keep us there and he chose his time to die. For that we couldn’t be more grateful.


It was the middle of the night 8th December and Lucas had been griping at us for an hour. The night staff offered to look after him and let us get some sleep. He had a dose of morphine and then minutes later the night staff knocked on the door to say that Lucas was having a blue episode. This wasn’t the first time it had happened and I wasn’t worried until I got to him. He was so pale and breathing so gently. We held him and talked to him and minutes later he had gone.

We sat with the night staff holding Lucas for the rest of the night and then at 6am we bathed him and dressed him and wrapped him up in his moses basket in “The Little Room” - a special bedroom that is kept very cold and where Lucas was able to stay until his funeral a week later.

James kept us all together throughout the funeral. He held a balloon for Lucas that he let go at the woodland burial site. I will never forget James standing there, so small on the icey grass shouting “Catch it Lucas” with such excitement , as the silver star floated up to the heavens. Nor will I forget how he turned round and waved “Bye Bye Lucas” as we left the graveside. James is still keeping us together now. It felt like we started grieving for Lucas in October, when he was diagnosed with SMA, way before we really lost him. Soon after his diagnosis, a good friend told me that we must look for the positives. My heart was so empty at this point that I thought it was impossible to find any good in it.


Today I can look back and understand what she meant. Although Lucas' body was weak his spirit was so strong. He was such a happy soul who just loved to watch the world go by. We learnt to treasure every minute with him and never take anything for granted. Most importantly we were given the time to say everything we wanted to say and to make sure we can look back on the 4 short months he was with us without any regrets. We’re now 1 year on and we’re still learning from the experience. Lucas taught so many people so much and for that I wouldn’t change a minute (except for the obvious). I miss you baby xxx.