Please send your support and good vibes as we fast approach Graces 16th birthday, and she is still not fixed, we again need your help. No one could have prepared us for the hell we have been through for the last two years. Grace endured 220 days in hospital last year and two false surgery starts whilst non experts and third parties involved in her care squabbled and disagreed , resulting in more psychological suffering for a child that is already suffering an enormous amount of physical pain. The blatant misdiagnosis, the doubters , the ignorance , the inaccuracies and sloppiness of the health service, the cruelty of the children’s authorities , the accusations , the meddling from the school, have all meant that we as a family have had to fight harder everyday and watch Grace suffer for far longer than anyone let alone a child should be expected to suffer anywhere, least of all in a developed and advanced country like the UK. Ironically all these services set up to facilitate children are the same services that have inflicted more anguish. No one ever sets out to have any of this happen to them, however, the stark reality is it can, and it has.

Whilst people have found Covid lockdown hard it has been the normal everyday existence for Grace , all whilst suffering daily excruciating pain . She has missed out on her teenage years , has had very little education , no contact with friends and most of all no support from specialist health professionals at all whilst being left to cope with her suffering alone at the mercy of a body that doesn’t work .

If a child has type 1 diabetes , should they be denied life saving treatment of Insulin ?

If a child has cancer , should we accept them , “as they are “ and deny them treatment ?

The plight of persons with Chronic or Rare ( or rarely diagnosed ) illness in this country is deplorable and when this extends to our children with no voice it just isn’t good enough.

Thankfully, now there is some light at the end of the tunnel as the German surgeon and a new specialist paediatrics compression centre in the USA, are finally providing accurate diagnosis for children and young people with these rare and torturous syndromes. No longer is “it’s all in your head” acceptable.

However, this comes an at enormous financial cost as well as emotional. Far beyond the reach of ordinary families like ourselves.

On top, of all the costs incurred last year from being out of the UK for 7 months , medical tests, hospital stays and expenses , we are now in a position that we have to find 5000 Euros for two scans, £450 for Covid testing UK, ( not eligible NHS ) 600 Euro for Covid testing in Germany , 40,000 Euro for operation costs and six week accommodation and expenses costs, plus ongoing specialist physiotherapy.

As Grace has finally been given the go ahead for an operation in Germany after her 16th Birthday on the 27th October, the time has come that we need to think about preparing to leave the UK again in order to get Grace the treatment she needs.

She will need to be rescanned in Leipzig before going back to Düsseldorf for the operation to go ahead .

Dean, myself and the girls would like to thank you from the bottom of our hearts for all the love and support you have shown to us already, but, we know it’s a huge ask, if anyone can find a way to help and assist us further financially by either donating , sharing, getting our appeal into the press, on tv , or in any which way, our need is now greater than ever to make this happen. We have relaunched Graces just giving page, to fill you in , and encourage you to continue to support Grace in her recovery.

It is also with great sadness that we now have very bitter pill to swallow as Maria our middle child has also developed a significant problem, and early indications on the CT scan are showing a similar problem. Maria has been vomiting for 9 months continuously and is unable to keep down any solid food. Yet again the UK health services feels it is ok to leave her alone to deal with the symptoms and she is receiving no support and no education, as history repeats itself .

The excuses have to stop.

The German team are working tirelessly to prove the genetic link between EDS a connective tissue disorder and vascular compressions. These theories are gaining huge support and one day these syndromes will be fully understand but in the meantime we continue to fight for our children’s rights not become statistics but to brave the way for answers so that fewer families have to endure the anguish that we’ve had to suffer over the last few years.

THE FIGHT CONTINUES .....

Dean & Jo Jackson- Matthew

This is what has happened to our Grace. She has been ill since 6yrs old, she is almost 16. In her short life she has endured multiple hospital stays, numerous invasive procedures including 5 general anaesthetics in the last couple of years all to no avail. Since September 2018 Grace has lost 20kg in weight. Earlier in 2019 thanks to a combination of an angiogram/venogram (where the femoral artery in the groin is punctured and dye is fed through ) and an 'award winning, Gold Standard colour doppler ultrasound (which we had to travel to Europe for) we have managed to obtain a full diagnosis of MALS (median arcuate ligament syndrome) SMAS (superior mesenteric artery syndrome) Nutcracker (compression of the left renal vein) and May-Thurner syndrome (compression of the iliac vein ). These compressions gradually worsen (as other veins have to compensate when blood flow is impaired) and eventually Grace will be unable to digest food, be unable to eat at all without artificial feeding via a tube, she will develop pelvic congestion and her kidneys will fail and eventually she will loose the ability to walk.

Grace Daisy, aka "crazy Daisy" is a enthusiastic & loveable character. As the eldest of three inseparable sisters she is loved by everyone she meets and enjoys talking (too much !) to all ages from 02yrs to 102yrs ! She has a fun and caring nature and at the age of only 9yrs she visited the children of 'Mother Theresa House' Kolkata. She is an animal enthusiast which led her to becoming vegetarian at a very young age. She has a close and hysterical bond with her 'Beagle' Billy Bob.

Grace dreams of travelling the world and is intent on working for the Virgin Group to fulfil her hopes of combining her love of travel, people and aviation.