A number of old and new friends will be running the Winchester 10k or for those not able to attend the event, running a virtual 10k, in memory of Annie Daisy Langfeld who heartbreakingly passed away on 23 October 2020 with a rare mitochondrial syndrome called Pearsons.

Annie was a little angel, that despite facing such adversity during here short life, showed so much spirit, fight and love. The memory of Annie has to live on and despite being heart breaking to think of her no longer with us, do some good in this world.

At Southampton Hospitals Charity, people are brought together to raise life-changing funds for University Hospital Southampton – the South Coast’s leading healthcare provider. From specialist services to pioneering research, the incredible supporters enhance care, experience and outcomes for thousands of patients every year. 150,000 of which visit the Childrens Hospital.

Southampton Hospitals Charity enhances the support, care and treatment of patients at Southampton Children’s Hospital. Patients range from birth right up to 18 when they transition into adult services.

In October 2018 our little Annie was born in Winchester Hospital.  Unfortunately due to concerns about her growth, Annie was delivered early at 38 weeks by emergency caesarean section at only 4.5 pounds.  

Straight from birth there were complications as Annie arrived completely anaemic and needed an emergency blood transfusion whilst also given help to breath and then placed on a ventilator.  

The paediatric team were not sure what had caused this so they contacted Southampton Hospital, where Annie was transferred that morning.

Following tests it was identified that Annie had a rare mitochondrial syndrome called Pearsons.  Annie's prognosis was not good and she was only given a 50/50 chance of reaching 2 years of age.

I later found out the team at Princess Anne were surprised Annie survived long enough to make it home.  However, that is what she did, she made it home in time for Christmas.  Although, we were not to know that that Christmas day was the only Christmas day we were to have her home without a trip to Hospital.

Annie's care was complex and between myself and my wife we had a 24/7 care plan, some of which I do not know how we managed to do it.  However, we did and we were lucky to have Annie at home for January 2019.  

Unfortunately Annie became very sick in February and was not able to keep her milk down.  This, with the insulin she required, meant her blood sugars were incredibly unstable.  We therefore had to admit Annie to Southampton's Childrens Hospital on 17 February.  A first visit of many to come but this one being the longest.

We got to know most of the nurses and consultants on a first name basis as we did not leave the hospital until late April.  I stayed in most nights with Annie either in a room with her whilst she was in the medical unit or in Ronald Macdonald Hostel across the road when she was in the High Dependency Unit.

It was during my stays my heart broke time after time at seeing so many poorly children admitted and the lack of facilities to keep them busy.  Also the lack of facilities for parents like me who stayed in night after night.  The family in the room next to us ended up staying in hospital for 14 months.

Annie was a little fighter though and continuously defied the odds.  She was home by the end of April and despite 3 weekly trips to hospital for blood transfusions, we managed to have a decent summer where we were able to build some family memories.  However, in October Annie was to then regularly have admissions due to infections and other issues relating to her blood sugars.

On 23 December 2019 Annie was rushed into hospital in an Ambulance with breathing difficulties and a rocketing temperature.  Although a  further course of antibiotics was required, I was able to take her home for Christmas Eve and Christmas day morning.  However, on taking her back to hospital for her antibiotics in the afternoon, her blood results showed she was neutropenic and needed to be isolated due to the high risk of further infection.  

We didn't get Annie home until 27 December and even then she was not right for Annie.  On the final day of antibiotics, Annie started pooing blood at an alarming rate and thankfully we were in hospital at the time.  

Annie would spend much of January in the High Dependency Unit again following a stay in the Intensive Care unit whilst on a ventilator again.

We were lucky to be home just before the pandemic struck and apart from regular trips for blood transfusions we were able to stay at home where we isolated ourselves.

Isolation with a vulnerable child along with our 5 year old was very tricky as I also had to work.  However, the planning from Annie's consultant for her blood transfusions, made the trips to hospital as painless as possible.

In September 2020 Annie became very sick again.  However, this time much worse than ever before.  She was struggling to maintain her oxygen levels and needed regular blasts of high flow oxygen to bring her saturation levels back up. 

Annie was in the High Dependency unit and needed constant monitoring for the rest of September and the first half of October.  Unfortunately the strain was too much on her fragile body and on her 2nd birthday Annie needed to be resuscitated and placed on a ventilator.

It breaks my heart to write this as it brings back such heart-breaking memories.  On 23 October Annie was not able to tolerate being off the ventilator and passed away in her Mummy's arms with her Daddy watching on.  Annie was only 11 pounds when she passed away.

I later realised Annie had spent a third of her life in hospital and for that same time my wife and I had to make sure one of us was always there and our son also had one of us with him.

I can't thank all the nurses and doctors enough for the love they showed us with Annie for many of these stays, especially the last one.  There were lots of tears from many and I realised that whilst I hated staying in hospital at the time it had become our second home with Annie.

This is why it is so important that we raise what we can to support all those Children that have no choice but to be there and their loving parents that are with them around the clock.  

More facilities are required help keep both the Children and the Parents spirits up during those long stays.  Two Retreat rooms have been funded already.  However, they need equipment to offer the poorly children and young people some much needed respite.  Further details of this cause can be found on the Southampton Hospitals Charity website  at https://southamptonhospitalscharity.org/money-raised-for-play-retreats/ 

My little Annie was such a beautiful little girl with such spirit and has shown me that we should all try to do some good in this world.  I would therefore love for this event to raise as much as we can for this great cause in the memory of my little angel whom I miss so dearly.

I will be adding further pictures of Annie to this page as we go forward with this cause.  . 

If you would like to take part but are unable to attend the event in Winchester a virtual run/walk has been set up at https://www.riplfitness.com/ 

Take care and thank you for your support