28/05/2025
please share we are desperately trying to get help for our son before it’s too late we have been dismissed for years and our worse nightmares becoming our reality please if you don’t have the time to read kindly share Harley’s story from one parent to another I promise I would do the same 💔
We are sharing Harley’s story in the hope we can get it shared far and wide and hopefully get him the help he so desperately needs, its cruel how bad he has been let down by the system that should have been there to care for him he’s spine has a curve of 120 degrees and he has completely lost he’s right lung as it was left to collapse he only has 25% lung function and desperately needs help asap before it’s too late for him please find it in your heart to share his story and help save our son before it’s too late Thank you for reading.
Our son Harley john harris born on 10.08.2010 was diagnosed with spondylocarpotarsal synostosis at the age of 4 in January 2015 his condition is so rare his DNA along with ours was sent to professor Robertson in new Zealand and there has only ever been 25 cases documented in the world, Harleys is even more rare due to the fact with this condition which is a mutation in the FLNB gene you would usually inherit one from each parent however Harleys has just one parents double mutation.
Harley was first seen at great Ormond Street hospital under dr Stewart tucker for paediatric spinal care since the age of 5 his initial curve in January 2015 was measured at 39 degrees, his second appointment in April 2015 measured at 45 degrees he was also fitted with a back brace, in December 2015 the brace came off as it was making his lordosis worse he's curve now measured at 50 degrees, we had always been informed that Harley would eventually have rods in his spine to straighten at a later date when needed, he had a anterior spinal fusion in January 2018 as advised however almost straight after we noticed a rapid decline in Harleys health and raised constant concerns with regards to Harleys pain he was having anger outbursts due to this also his spine rapidly got worse, in June 2019 we was told his curve measures 47 degrees, in February 2020 the curve measures 56.7 degrees, September 2020 it measured at 77.4 degrees it was around this time social services were involved due to accusations we were emphasising Harleys condition yet the evidence was clearly there when great Ormond street last measuring was august 2024 where they told us his spine measured around 85 degrees however our concerns were over looked and dismissed and nothing was done to help Harley.
We were accused by Harleys school at the time Shenstone school that we were emphasising he's condition and they got social services involved, because we didn't have at the time on any of Harley's letters that his respiratory function was declining the hospital said there was no readings as a matter of fact they did indeed have would we find this out at a later date.
Harley was also seen in respiratory at great Ormond street hospital for many years again every appointment we raised our concerns in Harleys decline of health, his breathing was laboured and he could no longer participate in activities he enjoyed dancing and playing football or even walk for long we was told at every appointment when Harley did the spirometer tests that they never got a reading of his lungs when he would do the respiratory tests when we went there although Harley fully participated in the breathing exercises and tests,
it wasn't until January 2024 of which a respiratory fellow didn't complete Harleys assessment fully that we went through pals to raise a complaint that we then see the head consultant a month later that they were suadenly able to find that Harley had a shockingly low (FEV1 27.5% FVC 25%0 27% lung function this was a devastating blow for Harley and us as parents as our concerns had been dismissed for years it also showed that there was reading from previous years 2021 FVC
56% 2022 48% which clearly showed his respiratory function was rapidly declining.
We then had a spinal investigation day in august 2024 where we see how bad Harleys spine had got of which we were devastated again raised concerns but was told there was no significant change in Harley spine and completely dismissed us as they had for years.
After this appointment we got a phone call to bring Harleys surgery forward to a matter of two weeks I'm not sure what it was but we had a gut instinct to ask for a second opinion as something didn't feel right why after all these years was they now trying to rush him into surgery to fuse more of he's spine. Also we was always told Harley would eventually need rods in his spine to straighten it up until a few months previous to the investigation day we was told this a scan of his hands was requested to make sure he had growth left for the rods which we had at the Evelina orthopaedics clinic of which we were told he still had growth left. we then had a follow up appointment at great Ormond street after the investigation day to be told this was ruled out as Harley was now too old yet he had been with the hospital for 9 years so they had ample opportunities to insert the rods but had now left him too long this was another red flag.
We truly believe knowing what we do now had we gone ahead with the operation great Ormond street wanted to do which was fuse more of Harley’s spine we don’t think he’d of made it off the table and still be here today by what the evelina have told us since.
We asked for a second opinion to see dr Lucas at the Evelina children's hospital of which we see in October 2024 we also asked for a second opinion at the Evelina for
Harleys respiratory due to their many failings in Harleys care telling us for years he had no readings of his lungs when in fact they did and this was detailed in the latest report.
We went into this appointment very optimistic however that was unfortunately not how it planned out as we were told the curve in Harleys spine was now so significant and measured at 120 degrees ill never forget the doctor asking for Harley to leave the room and being told the severity of his spine and damage already caused and the risks involved.
The plan was next that dr Lucas the spinal consultant to arrange for Harley to have mri and CT scans of his spine done urgently due to the complexity of Harleys spine and condition to get full detailed picture of his spine and torso anatomy then for him to be discussed in the next mdt meeting even though this was put through as urgent it was a further 6 weeks of us having to constantly chase up call and email the hospital and ask why they wasn't being done as they was urgent and the significancy of time before
Harley has he's scans done i had to go through pals in the end as we was constantly getting fobbed off and lied to the scans were finally booked for the 22nd November 2024
As they were done as a matter of urgency and we had atready waited 6 weeks for them to be done the scans were something l'd been asking great Ormond street for, for years again these requests were dismissed.
We was then told Harleys case would be discussed at the next mdt meeting on the 3rd December and that we would be informed within the week of the outcome and whether dr Lucas could help Harley or if he was inoperable, we waited all day for the call and never got any communication from the hospital we call dr Lucas secretary and the head of orthopaedics and spinal all of which said they would call me later that day which never happened we got no response other than an email to state that the spinal co-ordinator that was supposed to call wasn t even working on this day, we also informed the hospital that Harleys breathing had deteriorated further but yet still no contact.
Yet again we had to take our complaint to pals as we was getting no response and was simply being ignored and or lied to the next day after my complain the spinal
coordinator called me to say the team felt it best that Harleys care stay under great
Ormond street hospital, we was not only angry and disgusted this would even be suggested as we had gone through great lengths to explain how great Ormond street had failed Harley and that we was seeking legal action against the due to the now permanent damage to Harleys health under there care, also as it is our right as Harleys parents to decided where his care is and we chose the Evelina. I was then told i had to contact gosh to get Harley discharged from there care this was yet again another excuse to prolong the answers and results we were anxiously waiting for we did email both gosh and the Evelina to state that we wanted Harley's care to now be with the
Evelina not gosh.
We was then contacted that Friday by a spinal fellow as we had asked for the results of the scans we still didn't have he didn't even know Harleys case had already been discussed in two mdt meetings at this point and had no clue what was going on again we were informed that we would be called 10th December 2024 and that we would get the outcome of the tests and mdt the latest midday however this came and went and yet again we heard nothing, tried calling the secutary and spinal coordinator to be told the coordinator wasn t even working-
We are so upset that our son would and has been just left to deteriorate further i explained that his breathing had worsened and that Harley was complaining of pain also outlined that Harleys clinic letter clearly states he will deteriorate further of which he was and was being left to do so with no answers or communication we were being
constantly lied to and fobbed off.
When we were eventually next contacted it was not to tell us the results and a treatment plan that we had been waiting for but to say they now wanted to look at
previous images from gosh of Harleys spine.
Since Harleys initial appointment in October 2024 we have seen dr Lucas 3 times each time we have been told almost weekly from the team Harley would be discussed next week at the mdt meeting yet weeks would pass with no contact or update all whilst Harley continues to deteriorate and lose more function and more permanent damage and loss of independence.
We sent a handwritten formal complaint to st Thomas hospital Professor lan abbs the chief executive director which was the next step in the complaints procedure which outlined our concerns and not getting a response or the help Harley so desperately needs.
We next see dr Lucas on the 14th January 2025 of which we were told how severe Harleys condition was his spine had a curve of 120 degrees and that he wasn't sure if they would be able to help Harley due to great Ormond street fusing a huge part of his spine it had now worked as such a force and compromised his right lung we were told the concerns were that if they did intervene the risks and complications were now extremely high and the chances of failure to survive, losing all lung function, not waking up from surgery and completely paralysing Harley were now a major concern also if Harley was to be left he will deteriorate further.
Dr Lucas stated he now Wanted to wait for the upcoming sleep study and walking test results the following week also for radiology to look at Harleys head scan from the previous year to see whether his skull would be thick enough to withhold halo traction therapy again the call we was promised never came through.
On the 26th February 2025 Harley had respiratory at the Evelina which we now found out Harley needs oxygen during the day as he's sats drop whilst active something we ve been saying to gosh since 2020 and was ignored, the on 30th march we had respiratory again of which Harley now needs cpap machine to help him breathe when he's asleep as he's levels drop too low again this is another blow to his health another permanent health complication all of which could have been avoided had we been
listened to we go to hospital on the 8th June to received training and get the equipment .
On the 6th may Harley woke us up at 3am with excruciating pain and shortness of breath we tried everything to comfort him we also gave him his pain medication he was in so much pain he vomited it straight up and was shaking through being in so much
pain so we had to take him to a&e where bloods x-rays were taken and we could see his spine has deteriorated further his spine is now touching the outside of his right ribcage they also detected he had a chest infection, the hospital tried numerous times to call the Evelina we was up there 12 hours when they finally got back to the doctors they just said they now wanted to wait for Harley to get his cpap machine which is another 5 weeks:
We have emailed the department and pals as Harleys deteriorating fast and he needs help asap before it's too late we are being forced to watch our once happy healthy boy deteriorate before our eyes and he's been so terribly failed all he's life by the people that are supposed to help and care for him. Harleys breathing is so bad now going up and down the stairs getting in the bath is so tiring for him he needs oxygen to do so, were having to nave a bedroom built downstairs for him with a washroom because he simply can't manage anymore.
With all that Harley’s had to endure over he’s 14 years on earth with the countless operations and physical and mental challenges he faces daily he never gives up and continues to fight the next battle. He wakes up everyday with a positive attitude he thrives to make people smile and laugh with he’s cheeky sense of humour and still absolutely loves he’s favourite thing in the world which is watching Tottenham Hotspur’s and England football he’s still happy and positive but he keeps asking mummy and daddy when are they going to fix my back which as parents is heartbreaking but we will continue to fight every day, so we ask please find it in your heart to share far and wide so we can get Harley the help he desperately needs Thank you for taking the time to read Harley’s story ♥️
# Ben Harris Daniel Francis MP for Bexleyheath & Crayford KentOnline News The Wisdom Family
