HELP GET GRACIE WELL

UPDATE THREE YEARS ON - STILL NO DIAGNOSIS.

Gracie has spent the past three years rehabilitating with what is now being diagnosed as a brain injury. How it occurred is still uncertain and her consultants seem to think there is an underlying auto-immune condition. However, despite constant pleas and prompts nobody would make a referral to a specialist. We contacted a private doctor in Queens Square Neurology Hospital for a private appointment but he was unable to help and suggested Gracie’s GP referred her to a named consultant who deals with encephalitis. The GP refused and said Gracie’s symptoms were “odd”. This doesn’t help. It leaves us with much desperation and no medical help for Gracie.

Gracie has been left with learning disabilities because of the neurological event and this will impact her for the rest of her life. She has been left unable to write (despite rehab). Her writing is a jumble of dots and dashes that appear in column form on the far right of a page, (a symptom usually seen in stroke sufferers). Arithmetic, calculation and concept are severely affected as well as reasoning, organisation, forward planning, problem solving and understanding consequences. This means that Gracie will always be classed as vulnerable and always need care. She was not able to sit her GCSE’s as she suffered retrograde amnesia – meaning she has no previous memory of life. As a family we are not looking to blame for lack of intervention, but we are looking for a help to diagnose and treat, because Gracie is still unwell on many levels.

She suffers from extreme fatigue and will sleep for the majority of the day unless physically woken by mum and continuously prompted to get up. She suffers daily with sinusitis and dreadful facial pain. She is often very tight chested and her oxygen saturations fall when she walks around. She intermittently gets purple bruising under the skin, these form blisters and break leaving nasty sores on the skin that scab. She has suffers terrible joint pain, severe anaemia and is very underweight. When she succumbs to a cold or virus, her speech becomes slurred and often baby-like and she develops tics and Tourettes and non-epileptic seizures. Even during these events, the doctors scratch their chin and say it is strange. Standard bloods come back normal and Gracie is sent on her way. What her consultants do agree on is that there must be an underlying condition affecting her immune system. Why nobody is doing anything to find out what is wrong with Gracie really beggars belief. Our beautiful girl is suffering with no medical help.

When we set up the GO Fund, we hand no idea of the gravity of things or how long they would go on and that three years on we would be without help or diagnosis. Gracie had rehabilitation at a brain injury unit for children but further clinical investigations were not carried out. We then sourced a private consultant costing £450. He prescribed some antibiotics and anti-inflammatories which helped reduce the Tourette’s. We were unable to book a second review with him as he went off on long term sick.

In the meantime, despite our research going on for Gracie (in the absence of professional help), Gracie re-joined her school but was in a separate class from peers with a one to one learning support assistant. She was mainly doing arts and crafts. Battles were had been education boards to allow her back to a mainstream school and more battles were had with councils to facilitate transport for her as she could not walk to school and cannot be alone. This repeated when she joined college in 2022.

As mentioned earlier, when the GO Fund was set up, we had no idea of what was to come. We thought Gracie would get a diagnosis and recover and the funds were initially set up to decorate her bedroom while she was in hospital, which had no carpet, and wallpaper ripped off from the previous tenant. The room was decorated with new floor, paper, paint, a new bed, wardrobe, drawers, mirror, light shade, bed, rug and bedding and the cost of the labour which was discounted by a generous local neighbour. Owing to Gracie’s sensory issues and learning disabilities, sensory aids were purchased such as a weighted blanket, ear defenders, fairy lights and cutlery and anti-spill cups to help Gracie start feeding herself. The hospital trips she has had, many were taken by taxi, as owing to seizures, sensory issues and Tourette’s, public transport was not suitable. Gracie was also under the shielding category which added to the need for a taxi to appointments. The funds helped facilitate these journeys and has left us with balance of £1181 three years on.

As we continue to fight for investigations and hit a wall at every point, we have once again turned to private care and hoped that a fresh set of eyes/tests for Gracie may provide a breakthrough. We discovered a consultant whose bio seemed to fit, and we therefore booked a consultation with him in June this year, at Spire. So far it has been exceptionally difficult to find private consultants who will see children. His fee was £270 and he quoted us an additional £1000 for the blood tests he wanted to carry out. So, we went ahead knowing that the remainder of the GO Fund me donations would cover this apart from a short-fall of £89 - which could be afforded.

The invoice from Spire for the bloods alone has been sent though this week and is totalled at £1668. This is £668 over the original quote. The quote was verbal and not on paper and there is no way of disputing it. The consultant has asked to see Gracie again which would mean another £270. We have declined the review and asked them to send the findings to the GP in order to help request an NHS referral again. Therefore we are asking for help in this desperate situation as despite all our best interests and efforts, the situation is landing a struggling family in debt.

We are trying to raise the short fall between the raining balance of the Go Fund and the Spire bill. That is £757. The donation tab will be switched off then as we have reached the end of the road with what we can afford and do, and just hope that this last attempt and any results sent to the GP can open up a new line of enquiry with Gracie’s health.

Thank you again for your support.

MAY 2020

Thank you for taking the time to read.

The last few weeks, while so many of us far and wide have been enduring the many curveballs and worrying times brought about by Covid -19, a very different and heart-breaking situation has hit our family. My beautiful, 14 year old niece, Gracie, has been struck by an illness, still undiagnosed and it has currently left her with the most devastating symptoms.

Gracie was enjoying the time off school like most teens during the sunny lockdown. She was compliant with her online school work and likewise her online dance lessons with her street dance group. Dance, music and art are her passions. Gracie is a laid back, polite and quiet natured girl and although she has endured more than her fair share of hospital admissions in her young life through asthma and a kidney condition that required stent surgery in 2018, Gracie has always bounced back and carried on.

However in the last week of May following a 6 day admission following an asthma attack, Gracie was released from hospital, although not really recovered. Whilst at home she developed severe headaches, pain in her spine and legs and remained breathless. She was re-admitted requiring oxygen support. She had also developed agitation that made her muscles uncontrollably jerk. The doctors discharged her as her bloods were normal. Over the next 48 hrs, things became worse.

Gracie was sleeping 18hrs a day and becoming incoherent. She developed both severe motor and vocal tics and she was taken by ambulance to Epsom Hospital again. Despite her poorly state, she was discharged within hours because her bloods were all normal.

Following a phone call from a different and concerned doctor the next morning, Gracie was re-admitted but by now was hallucinating. Over the next 24 hours, she deteriorated, lost her speech and became catatonic. Over the next 2 days, Gracie’s speech returned but was very impaired and baby-like, in fact, her whole demeanour was baby-like. She was still having terrifying hallucinations and severe head pain. Gracie was actually discharged in this state.

An MRI and lumbar puncture were carried out following a complaint from family, but only a week later. 

The current situation is this; Gracie is home but has severe autistic regression. She has major sensory issues and cannot tolerate light or noise or even brightly coloured objects. She cannot read, write, draw or feed herself or manage personal care. She is having multiple seizures per day . They are so distressing to see. She remembers her immediate family but barely anyone else, not even her friends. She flits from being catatonic and humming to being loud and disinhibited. She requires 24 hour care as she wanders and has no concept of danger and of course she has seizures, which sees her keel over at any given moment. She has a very interrupted sleep pattern and often displays symptoms of mania during the night. 

At the request of her family, who feel Epsom Hospital have failed to act in a timely manner to her symptoms, Gracie has now be referred to Great Ormond Street for further tests and a second opinion - which we await.

I have set up this Go Fund Me in a bid to help my sister - Gracie’s mum, provide some things for Gracie which will help at home and to create a bedroom for Gracie that is more appropriate for her current needs. My sister, Samantha, is Deputy Manager of a Nursery and a SENCO. She is currently furloughed, but with Gracie as she is, there is obvious uncertainty over any return to work and if she had the funds for the above, I would not ask for help. People are keen to help my sister but because of Covid and Gracie also being in the shielding bracket, Sam is unable to take people up on the offer of practical help. Many people have been very kind and sent Gracie cards, sweets, chocolates, clothes, jewellery and toys. With so many offers, I thought perhaps this would be a better, more practical way in which people can help.

With your help, the aim is to purchase Gracie:

1. Double bed and general redecoration of her room, (it was last decorated in early 80’s by a previous owner and half of the carpet in her room was ripped up by them. It has taken my sister almost a year to redecorate the downstairs of the home they moved in to last year owing to financial hardship). 

2.blind £20.00

3. Discreet ear defenders £17.99

4. Weighted blanket £150 - depending on weight needed.

5. Mobility cutlery £15:00

There is no current help in place to support my sister with Gracie and she is managing her needs as well as looking after Cyrus, Gracie’s younger brother. What has happened to their little happy family is nothing short of catastrophic. Gracie is a different girl and we hope and pray Gracie can recover.

I will keep people up to date with Gracie’s story.

Thank you - xxx