Our little Max had SMA - Spinal Muscular Atrophy, Type 1. Genetic disease that causes progressive muscle wasting and leads to early death. With his diagnoses we asked ourselves the impossible question ‘Why our Max, why us? The more we asked the more upset we became. We realised it was time to accept what the future had in stall for us and focus on what was most important and that was Max and our little family. 

So when the hospital staff asked us where we wanted to spend the last days or weeks with Max we reached for Ty Hafan hospice. We both felt we needed every support we could get to make the remainder of his life comfortable and memorable for us all.

I remember I cried all the way to the hospice holding Max tight as I thought this was the last journey I ever make with my blue eyed boy. On the arrival at the hospice we got dedicated a team of nurses and carers who took to Max immediately. We stayed in an apartment at the end of hospice where we could continue as a normal family but still have the availability of professional team 24 hours 7 days a week. Max also had a separate room where we stayed in the day. Our families and friends could visit as often as we wanted and some could even stay close by. We were fed with hearty food three times a day so we could focus on Max and us as a family. We were able to take him swimming in a hydrotherapy pool which he loved, for walks on the grounds, on trips to Barry Island or Cardiff Bay. We played with lights and colours in a sensory room. Made handprints and footprints and other artwork that hangs on our walls in the house. We were able to make those memories that we will never forget. 

The hospice staff also showed us that it is ok to smile at such a sad time in your life, I wanted Max to remember me smiling not crying. That is ok to talk about Max’s death and funeral whilst he is still with us, that those decisions we made that day were important for his future. We were taught how to feed him through the NG tube, how to change the tube and administer buckle morphine when the time comes. I felt confident that I can take good care of Max when we took him eventually home. We had dedicated nurses, outreach team, who visited our home on a weekly basis. They were there to guide us and ensure we have plenty supplies. When the time came and Max passed on the morning of 16th May 2015, our support worker and nurse arrived within an hour and supported us through the worse day of our lives. 

I feel unlucky to have lost my boy but I feel lucky I had Ty Hafan by my side. I know if it wasn’t for the care of Ty Hafan people our life would be different. Myself, my husband Glyn and our daughter Mila are forever grateful for their physical and mental help. Two years since Max’s passing and we still have a place there. Once you enter their lives you become a part of their family and the door is always open. 

Life can be cruel and many families will need Ty Hafan support like we did. I would not want any of those families to go through it alone. Please please if you can donate as little or as much so Ty Hafan can continue their fantastic work. Thank you for reading and thank you for donating. 

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