17th March 2005 - 18th October 2013

Emilia was initially diagnosed with idiopathic interstitial lung disease, in March 2013 following a bout of pneumonia at Christmas 2012. There had been some indication of an underlying illness with Emilia during 2012 but it had been put down to asthma.

Following chest X-rays, CT scans, an open lung biopsy and various trips to Birmingham Children's Hospital, Royal Brompton and Harefield and Great Ormond Street Hospital, Emilia was further diagnosed with Pleuro-Parenchymal Fibroelastosis, something not having previously been seen in children. Whatever the cause, all we know is that the disease aggressively took our youngest daughter from us in eight months or so.

On 29th September 2013, Rays of Sunshine, granted Emilia a very specific wish - to be driven in a pink Lamborghini by Top Gear's Richard Hammond. H R Owen supplied the Lamborghini Aventador LP 700 and Yianimize Redefined plasti-coated it the most vibrant of pinks. Despite being cared for in a high dependency unit at BCH, her consultant went out on a limb and arranged for her to be returned home, with a medical team, for a few hours to enjoy her very special day.

There was some doubt as to whether Emilia would be blown away by the whole experience and not talk to Richard, but they just chatted away. It's very clear from the video and our time with Richard that she was mesmerised by him and loved being with him. Richard was superb - he having girls of his own - and got straight onto her wavelength.

Following a wonderful day with Richard Hammond we went on to Great Ormond Street Hospital for lung transplant assessment and then back to Birmingham Children's Hospital's high dependency unit, where Emilia died. Even in her last few hours she showed extraordinary strength and courage telling us not to cry and asking that she be buried at home and not cremated.

We brought Emilia's body home and she has been buried in woodland close to the farm in which we have so many happy memories of a child with a zest for life, a cheeky character and boundless love for her family, pets and friends. Our home is quiet without Emilia and Alexandra is at a loss without her younger sister. A simple ceremony with family and close friends was held on 23rd October 2013 in which her better qualities were tempered by memories of Emilia being a strong willed toddler and, at times, being a wholly annoying younger sister - which is, of course, the natural role of any younger sibling.

We, and our medical team, were shocked by how quickly Emilia deteriorated over the last few weeks - it being less than three weeks from her day arranged by Rays of Sunshine where she was full of happiness, smiles and in awe of a pink Lamborghini and Richard Hammond. We knew her condition was terminal, with or without a transplant, but we had hoped for a month or so more with her.

The NHS was superb in caring for Emilia and we thank the paediatric medical teams at Hereford County Hospital, Birmingham Children's Hospital, the Royal Brompton & Harefield and Great Ormond Street Hospital for the steadfast care given towards Emilia. Emilia was taken away from us within eight months of diagnosis. Along that journey a remarkable consultant, Dr Satish Rao, at BCH has supported us. Without him, his careful consideration to the challenges of Emilia's prognosis and his determination to involve worldwide specialists, our lives would have been significantly harder to bear. Undoubtedly a highlight of Emilia's life was the day arranged by Rays of Sunshine. Stacey Edwards at Hereford Hospital first suggested a wish for Emilia, a special day, which appears from You Tube to have touched millions of people, would never have happened. Without her suggestion a bright day would not have been had by all of us.

Our daughter has died, but her memory will stay long in the hearts of those that knew her. A service celebrating Emilia's life was held at St James' Church, Kimbolton on 14th November 2013.

We have set up a charity: The Palmer Children's Trust (Registered Charity Number: 1155644). We had thought carefully whether we should name the charity after Emilia, but then came upon the idea of "crowd funding" and over the coming months we will be contacting Palmers across the UK for support. The charity's objects are to:

(1) relieve sickness, promote good health and assist in the treatment and care of children and young people suffering from life limiting mental or physical illness of any description or in need of rehabilitation or palliative care as a result of such illness ("Ill CYP"), by:

(a) the provision of facilities and equipment for hospitals, hospices, specialist schools that provide treatment or care for such young people;
(b) supporting research into life limiting diseases affecting children and young people through the provision of grants to academics and clinicians at or associated with UK's paediatric NHS hospitals; and

(2) relieve Ill CYP and their families and provide respite to these families by:

(a) providing or assisting in the provision of facilities for the recreation and other leisure time occupation for Ill CYP and encouraging their participation in society with the object of improving their conditions in life;
(b) providing financial and practical support and other assistance for the relief of Ill CYP or their families who are in need, hardship or distress; and

(3) further such other purposes as are exclusively charitable under the laws of England and Wales for the benefit of Ill CYP and their families by providing financial support or grants to other charities or directly to beneficiaries as the trustees may determine.

More details can be found at We hope that the this charity will flourish and be a lasting memory of Emilia.

Julian and Rachel Palmer
Kimbolton, Herefordshire, United Kingdom