Our first introduction to Rebecca House was a flyer explaining what the Rainbow room was, it was felt that we should be prepared, upon reading it, we put it to one side.
Our daughter Eva Rose Crossley was born on 16th August 2011. Up to the moment of her birth we thought we were having a healthy baby, in the split second she arrived all our hopes and dreams came crashing down around us. She was tiny, weighing only 4lbs 12ozs, within the hour she had been taken to Special Care Baby Unit, at two days old she was transferred to Alder Hey, the specialists there confirmed what Nobles had feared, Eva had numerous holes in her heart. As her weight was an issue we were sent home until she was strong enough to go through surgery, we returned to Nobles.
When Eva was 9 days old we were released from hospital, 23 hours later she had her first Apnea attack, (this is where the brain forgets to tell the body to breathe). When she was four weeks old she started to have seizures, on the 13th September Eva’s diagnosis was confirmed, she had full Edwards Syndrome or Trisomy 18.
The most common type of Trisomy is Downs Syndrome where a baby has 3 copies of the 21st chromosome, Trisomy 18 or Edwards Syndrome is the second most common Trisomy and occurs when the baby has 3 copies of the 18th chromosome, because the 18th chromosome carries genetic material which is vital to life this syndrome has a far more devastating effect than Down’s. It occurs in around one in 6,000 live births, the majority of babies with the syndrome die before birth, normal life expectancy is 4 days, 50% of children die by the age of 2 months, with only 5-10% surviving beyond one year.
We remained on the Children’s Ward for another 4 weeks until Eva was 8 weeks old. We decided at that point we wanted to take her home so she could experience normal family life with her brother. We were determined that our little girl would prove everyone wrong and that she would make it past her 1st birthday so we made plans for respite care at Rebecca House and made various other appointments with consultants regarding her care.
The first visit to Rebecca House was on my own, I had left Eva under the care of her many aunties and uncles of the Children’s ward. I wasn’t sure what to expect and was quite nervous, I was pleasantly surprised, it was colourful and bright and everyone was warm, open and friendly.
Our next visit to Rebecca House was one week later when Eva had passed away – she had made it to her 9 week birthday.
Eva was placed in a Moses basket in the Rainbow Room. The girls explained until the day of her funeral, we were to treat Rebecca House as our home. We could come and go as we pleased, if we wanted to stay, they would make up a bed for us, if we wanted to go home, we could call.
They asked what music we played to Eva so that they could play it to her, when they discovered that they didn’t have the CD they went out and bought it. They were always with her they never left her on her own.
They greeted our visitors, made them cups of tea, fed us, listened to our stories about Eva and told us she was beautiful, they wrapped us in a blanket of love.
As Eva had always looked so gorgeous in pink we asked that everyone who attended the funeral wear pink. The morning of the funeral we arrived at Rebecca House to be greeted by Frances Bland, Team Leader for Rebecca House wearing a pink skirt suit, the girls had also bought pink roses to wear on their lapels.
Everyone at Rebecca House still welcomes us with open arms each time we visit and Eva’s picture is proudly displayed alongside the pictures of all their other children, they say that she is very much “part of their gang”.
Following discussions we came up with the idea of Eva Rose’s Garden, it was our way of saying thank you to Rebecca House for everything they did for us and a way for us to honour our little girl. In August 2013 after 2 years of fundraising on the day after what should have been Eva’s 2nd Birthday ‘Eva Roses Garden’, was opened to the public. The garden was designed with the children of Rebecca House in mind. Filled with interactive sensory toys it is a little oasis in a big garden where the main aim is to have fun. Eva Roses Garden is also used by many of the young children who come to visit relatives who are patients in Hospice IOM/Rebecca House. The garden can help them for a moment take their minds off what can sometimes be a very anxious visit. If you would like more information please visit our Facebook page www.facebook.com/evarosesgarden
Please support Julie, who would like to install some more equipment at Eva’s garden.
“Now it’s my turn as Eva’s mummy to raise some funds for a special interactive fountain that we’d like to put in the garden. Grief can do funny things to you, mentally and physically. In the 4 years since Eva died I’m not ashamed to say my health and fitness levels where not my No1 priority. Seeing everyone’s fundraising efforts has inspired me to sort myself out! In the coming year I intend to do a number of challenges, New Years Day dip, 5k runs, The Parish Walk, Toughmann, the Manx Ultra Marathon route 24hr hike and goodness knows what else… there will be some buddies joining me for a few of these challenges so I’ll keep posting updates of how we’re all getting on.”