Our Beautiful Bethany

We are raising funds for our beautiful niece Bethany and family who need help and support financially to be able to give Bethany the life she deserves.

'Our daughter Bethany was born on 20th January 2018. She was born with a rare life threatening condition had to stay in hospital for the first two years of her life due to her having severe seizures that caused her to stop breathing daily and on occasion her heart stopping.

She was born at QEQM Margate she was not breathing and needed to be resuscitated. For the next two days she was erratically shaking intermittently, before being transferred to St Thomas’ hospital in London. On arrival Bethany had to have life saving surgery on her bowel due to an infection. She then spent the following 6 weeks in intensive care where it was touch and go many times due to infections and seizures whilst the consultants tried to determine what was going on.

She was then transferred to the children’s Evelina hospital where she spent the following two years between the neurological ward and intensive care. It wasn’t safe for her to leave hospital as she would have seizures daily where she would require resuscitation for each one and at times cardiac arrests where CPR was required. Each seizure was a crash call and required at times up to ten doctors, consultants and anaesthetists to revive her. She had 42 of these life threatening seizures in one week once. She has also had 14 invasive operations over the two years in an attempt to stabilise her. As time went on Hospital became a dangerous place for her to be as she kept picking up viruses and became resistant to a lot of the treatment she was getting, effectively meaning if she was to stay in hospital she would have died.

Fortunately we were able to get a nursing package where she has a nurse and a complex carer with her 24/7 to try and keep her safe at home. Four days after her 2nd birthday we finally got her home just before Covid hit. We effectively went straight into lockdown to keep her safe not just from Covid but all the colds and flus otherwise she would end up in hospital.

However In January 2022 Bethany had a full cardiac arrest at home where her heart stopped and we had to give CPR for 15 minutes to keep her going until the ambulance arrived. She was then put on life support and transferred to St George’s hospital. unfortunately since then every 3-4 months she catches a virus can’t cope with it and is admitted to intensive care where she has to fight for her life and is put on life support.

She was diagnosed with Type 2 respiratory disease last year, where she struggles to release her carbon dioxide which causes her to lose her drive to breathe. When she gets a cold her saturations drop and oxygen has to be given in order to keep her alive. However the more oxygen she has the more CO2 she retains and this then causes her to go into respiratory arrest and requires her to be ventilated.

Bethany has had 6 intensive care admissions in the past 2 years all requiring life support, each lasting between 3-4weeks and involve her being 70 miles away from her home.

Not only does she suffer from these two conditions but she is also disabled, has no voluntarily movements whatsoever and has a constant tremor over her body which she can not control. She is non verbal, visually impaired and requires all her feeds and medications to be administered through her gastro tube in her belly. She has ten different medications given to her daily that she needs to have in order to keep her stable and daily chest physio to clear her lungs from secretions otherwise they will collapse. Bethany’s condition causes her to have multiple sleep apnea’s every night up to 50 in a night. She stops breathing completely with these and requires her nursing staff to stimulate and give oxygen.

Bethany is such a happy girl who enjoys playing and going to school where she beams and laughs with other children.

When one of us gets a cold we have to segregate the house in the hope she doesn’t get it. This can be for up to two weeks at a time where she doesn’t properly interact with us or even see her siblings due to the life threatening symptoms she demonstrates if she was to catch it. We don’t allow anyone in our house that has a cold, friends, family even her nursing staff. The risk is too high. At school she is always kept separate from her class if anyone has a cold.

Why I'm fundraising

Bethany has been labelled as one of the most vulnerable children in all of Kent and Sussex whilst having one of the most severe cases of epilepsy in the southeast. Her condition is so severe that it is believed this will limit her life expectancy significantly. As parents we have had to give up both of our careers as teachers, with Dad struggling to even work one day a week so that we can work with her nursing staff to keep Bethany safe and ensure that she lives the best quality of life she can. At times due to staff shortage we have to cover the shifts which includes all medical care and staying awake all night ensuring we can see Bethanys face at all times in case she was to stop breathing. Her quality of life is something that we want to enrich and treat her to some holidays and days out which all other children can do.

The impact of your support

We had to borrow money so we could buy our house and have adaptions made so that Bethany had the room and equipment she required. With having two members of staff with her 24/7 this involves all of medical equipment and electricity being used all day and night to which we do not get any help with and are occurring significant debt as a result. Days out are difficult as we have to pay for two members of staff wherever go. We are also unable to buy all of the equipment that she requires to help enrich her life.

Ultimately we are asking for your support to take the pressure off and enable Bethany and family to have the best quality of life.

Lots of love Shara & Charmain xx