Sarah Jane Forrester (nee Whyler) 14th June 1971 – 13th July 2008
Sarah's mother Sue Whyler writes ......

 

“She lived for those she loved and those she loved remember”

It is now just over a year since Sarah, and her unborn baby, died. We are still in shock from her sudden and unexpected death. We miss our beautiful daughter so very much.

Sarah was born on 14th June 1971. The excitement of her birth was shortlived as within 24 hours a paediatrician came to inform us that Sarah was very ill and probably would not survive the day. She had a very large liver and spleen and seemed lifeless. Sarah was taken away, wrapped in tin foil, to the local Children’s Hospital and I did not see her for another week. My husband, Geoff, visited her every day whilst I was made to stay in the maternity hospital.

Somehow, although no treatment was administered, Sarah survived and we were allowed to take her home when she was three weeks old. No one knew what was wrong and all manner of tests were undertaken. Her liver function tests were abnormal and she failed to thrive. At about three months Sarah was referred to Professor Mowat at Kings College Hospital in London. He performed a liver biopsy which confirmed inflammation of the liver. She attended hospital clinics every week for some time and was to remain an outpatient at Kings for almost 30 years. During the last five or so years of her life she was also seen by Ed Wraith at the Willink and more recently by Dr. Lachman at the National Neurological Hospital.

From ages 2 – 5 Sarah was given heavy doses of steroids in an attempt the halt the inflammation which was causing cirrhosis in her liver. By the age of six Sarah’s liver function tests were normal but she continued to be seen in the liver clinic. She was fit and well and doing everything that a normal child does – and more.

It was when Sarah was 14 that the true diagnosis of her condition was made. At the time she had been suffering from a very bad sore throat, hoarseness and bad cough. Various tests proved inconclusive and eventually a bone marrow biopsy was performed which revealed cells characteristic of Niemann Pick type C disease. We were also told that our son, Jonathan, who was two and a half years younger than Sarah, and who was also a patient at the liver clinic at Kings, had the same disease! The prognosis was frightening.

Despite the odds Sarah was fit and healthy – her only weakness was her susceptibility to sore throats and coughs. She took A Levels followed by a degree course at Christ Church Canterbury where she trained as a primary school teacher. She taught in Herne Bay for three years and then came home to Bromley in 1996 where she was successful in gaining employment at a primary school in West Wickham. She remained teaching at this school until her death in July 2008.

Sarah married Andy on a wonderfully sunny day in August 2003 – a perfect wedding in every way. They had a son, Ben, in December 2005 – weighing 8lbs 13oz. Sarah was an exceptional wife and mother who loved her family dearly, just as we all loved her. She was a beautiful person in every way.

Throughout her whole life Sarah had been very happy and wherever she went she made lots of friends. Although well aware that she had NPC she refused to give in to her condition, was full of courage and lived life to the full. The many tributes paid to her at her funeral by her many friends were testimony to her caring, loyal, and fun-loving nature. She kept in touch with so many people from her school days, and university. She never forgot a birthday and it was a shame she was not a shareholder in the card shop “Paperchase”. She was much loved by her colleagues at school, parents, and children. Andy and Ben had brought her much happiness and she had become very close to three other mothers whom she had met at ante natal classes. They still meet every Thursday with their children and always include Ben and, if he is around, Andy. A lovely thing is that all Sarah’s friends and colleagues still keep in touch with us.

Once Ben was born Sarah reduced her teaching load to two days a week and she really enjoyed this. She was 33 weeks pregnant with her second child and looking forward to breaking up for the school holidays and going on maternity leave when she died very suddenly from septic shock associated with a Streptococcus A infection. This very rare occurrence had overwhelmed her body and she was dead within an hour of calling an ambulance. Unfortunately her baby, Katie, who was quite beautiful, was stillborn and we were told she had died because Sarah was dying. Sadly Sarah never knew the baby she was carrying was a girl – it was more than she would have dared hope for to have a sister for Ben, who was then 2!

We, as you can imagine, are finding it very hard to deal with this tragic loss which has brought us very close to her husband, Andy, and Ben who fortunately live nearby. It seems all the more tragic that Sarah died from an overwhelming infection when we always thought it would be NPC that would claim her.

Our son, Jonathan, unlike Sarah, has displayed neurological involvement due to NPC notably since the age of 16 and is limited in his ability to work. Aged 35 he is currently employed by Morrisons but they have only given him 9 hours work a week which is not enough to fill his time.

We have discovered how difficult life is for the disabled. Jonathan has a lovely nature, is outgoing, kind and caring and yet now is becoming very depressed and lacking in motivation due to the rejections he receives from job applications. Despite laws to safeguard against discrimination, life seems to be full of a lack of understanding from employers, Job Centres, Inland Revenue and very little support is available especially, as in his case, if you appear outwardly normal. Jonathan has an increasing tendency to trip and fall now which is distressing. We realise the future for him will not be easy!

We also realise we were extremely lucky to have Sarah for so long, leading such a normal and wonderful life and we will always be grateful for that. But whenever a child dies it is the most awful thing to happen to a parent. In Sarah’s case we find it hard to understand how life can be so cruel. How can she have a disease like NPC but then die so suddenly from something completely unrelated? Both Ben and Andy have been incredible over the past year. Andy has continued to do all the things Sarah used to enjoy so much and he has decorated their new house as she would have liked it. The “two boys” have indeed been an inspiration to us and kept us going.

 

Heartfelt thanks to all who have kindly sent donations totalling £2531.40 in memory of Sarah and Katie Jane Forrester.

 

Sydney Bowling and Jo Tickner , close friends of Sarah (Sarah and Jo had known each for twenty six years) ran the London Nike + Human race on 31st August,2008, in memory of their friend. They write: “Unbeknown to even to those closest to her, Sarah suffered from NPC, yet she lived a full and normal life. She was a wonderful mother, a successful teacher and a loving wife to Andy. It is therefore even more tragic that she passed away from something unrelated to NPC” They raised £2166.00.