Alfie S's quilt    (Quilt Completed)

Thank you

Thank you to all the amazing people who have helped make Alfie's quilt. It has come today and we all love it. Everybody from Love Quilts are talented and generous for spending their time to make these quilts for all the children. Alfies room is being decorated to a monkey/jungle room and this quilt will fit in lovely. I can't wait till Alfie is old enough to understand the meaning of his quilt. Once again Thankyou for your generosity and time love Alfie and family x x

Finished photos

Individual squares

Fabric

Card

Stitched by: Leanda

Biography

Since Alfie was born we knew something was not right and took him to A and E numerous times in the first two and a half month. Each time we were sent home with acid reflux medication . Eventually at two and a half month we rushed Alfie to A and E with severe sickness as he was also severely underweight. We were kept in Sunderland royal hospital for a few days before we were told Alfie had Williams syndrome then within ten minutes we were told we were being sent to the RVI in Newcastle to see cancer specialists.

When we got to the RVI Alfie was tested for 24hours we were then told that they would have to test both Alfie's dad and myself to determine that Alfie had a ultra rare bone disease . Both Alfie's dad and I were tested and were both found to be carriers of the bone disease which is also rare that both parents are carriers . We were told Alfie would not live past 6 month and after Christmas Alfie's days were numbered as there are no treatments for his disease .

After a few days the endocrine team at the RVI paired with the bone team at Sheffield who are the specialists in hypophostasia. They were told that there was a trial drug in America which they were trying to make available at there hospital. We waited two months in hospital for the drug to be available . The staff at the RVI then sent us home as there was nothing they could so but wait and eventually we were able to go to sheffiled on November the 25th to start the trial drug.

On the 15th of December we noticed Alfie's breathing was getting worse . We took him into Sunderland hospital were he remained for a week on oxygen we were them sent home , within five minutes Alfie was rushed back into hospital after having a blue episode . Again we were sent home after a week and returned after one day when he suffered a blue episode again.

On December 22nd Alfie was rushed into intensive care at the RVI as he was getting worse where he was put to sleep on a ventilator . He was awoken after a week or two and eventually was admitted to a respiratory ward on a humidifier machine to help his breathing within a couple of days his berthing again deteriorated a decision was made that Alfie needed a regency traceyostmey .

Alfie had his emergency op at the end of January and uses a ventilator and oxygen . He was admitted back onto the ward where he stayed until the end of march when we brought him home . Alfie has now put weight on and is doing very well, no body knows what the future holds as Alfie's condition is so rare. He is still on a ventilator and oxygen and is developing well he has just celebrated his first birthday and is starting to hold up his head with little help Alfie is still immobile but is getting better each day. We have just returned from Sheffield for his follow up where they have found evidence Alfie's bones are getting stronger . I have to inject Alfie on a Monday Wednesday and Friday with his trial drug which is called asfotase alfa.