Emilia's Story

"Why Martin House Children's Hospice holds a special place in our hearts."

"When our daughter Emilia was diagnosed at 10 days old with a life-limiting condition, we were told about Martin House and asked if we would like a visit to see what facilities they offer. We took them up on the offer and were greeted by a lovely lady called Sheila. She showed us around the amazing facilities that Martin House has, gave us a coffee, we ate some amazing cakes and we were introduced to some of the care team. Martin House has an lovely art room, music room, play room with fabulous toys, sensory room and a jacuzzi pool.
"We thought the facilities were wonderful, but to be honest we thought Emilia is too young and will never be able to use the facilities like an older child would. Emilia had limited movement, limited vision and with such a short life expectancy, of maximum 6 months, we wanted to care for Emilia at home with us, we didn't need the facilities at Martin House so we thanked them and went on our way. We were Emilia's parents and didn't want anyone else to help look after her.
"Then at 4 months old, Emilia became very poorly, she was struggling to swallow. I would wake up continuously through the night and hear her struggling and have to help her be able to breathe. This continued for days to the point where we were up all night and we hadn't slept in 5 days straight.  I called our community care nurse in floods of tears because I was so tired. I wasn't worried about me, I was worried I wouldn't be able to stay awake and hear Emilia struggle and be able to help her. I just couldn't be the Mummy I needed to be.
"Our care nurse persuaded us to have a couple of nights at Martin House just to have someone look after her during the night whilst we caught up on some sleep. We agreed and that day we were booked into Martin house. Within 15 minutes Dr Mike had a look at her and decided we need to change her medications. He realised her issues with swallowing were seizure related, and within 2 hours of the medication settling, Emilia could swallow unaided! 
"Of course the first night there I couldn't sleep either, I had given Emilia’s night carer my full list of instructions of what Emilia liked and what signs she would show if she was in trouble. I still worried so I stayed awake worrying, even though the care team would have called me in our room with any issues. The second day my husband Richard and I took in in turns to have a couple of hours sleep during the day whilst the other looked after Emilia downstairs.
"We were fed by the fab chef Robin. It was so nice to have someone look after us so we could concentrate on Emilia. That evening I was a little more comfortable about leaving Emilia, it was the same carer as the previous evening and I managed to sleep for 15 hours! It was then that I realised that we needed to be fit and strong to look after Emilia, and we couldn't risk getting poorly, so we had to look after ourselves and get as much rest as we could.

"I changed my view of what Martin House was there for; they weren't there to give us a break to have some fun without our beautiful baby girl, they were there to keep us strong so we could be the parents we wanted to be for Emilia and create the family memories we will treasure for a lifetime.  Emilia’s condition was very scary and we never knew what the next day would bring us, but there is a lot to be said to be able to face each day with a good night’s sleep and that is just part of what Martin House did for us!  Thank you!"