Help for Stacey
Donation protected
Hi Everyone,
Thank you for visiting our page.
We have decided to update the story as of today (4.4.19) as things have changed and developed since the fundraising began on 31st December 2018.
I am still fundraising for my Daughter, Stacey. She still requires tests and investigations that the NHS will not fund.
To date; thanks to the kind generosity of friends, family, strangers, supporters etc we have managed to get Stacey the upright MRI tests she needed in March 2019.
The MRI results were then sent to a consultant in Barcelona for review. He is a neurosurgeon and a spinal surgeon. From the MRI results he diagnosed Stacey with Atlantoaxial Instability (AAI) & Atlantoaxial Subluxations (AAS). It was most evident when Stacey turned her head left and right.
Along Stacey's health journey over the last 3+ years she has been given many different diagnosis including but not limited to; Mast Cell Activation Syndrome (MCAS), Connective Tissue Disease, Postural Orthostatic Tachycardia Syndrome (PoTS), Lipoedema & Lympodema.
Stacey's health and life have changed dramatically. She worked full time for the Local Authority but now aged just 31, was medically retired last year at just 30. She had a lovely home but has had to sell it and move back in with myself (her Mum) and her Dad.
We hope your kind donations will help us get the tests, diagnosis and possibly treatment she needs to get better. We still need to get Stacey;
- Autoinflammatory Panel Disease testing (it was suggested by a Professor in Rheumatology that Stacey may have an autoinflammatory disease considering the only treatment that seems to help is high dose steroids.
- Genetic Testing for EDS as it has been suggested that Stacey may have EDS due to all her issues/symptoms and the fact she has the linked conditions MCAS & PoTS.
- Digital Motion X-ray is needed to assess Stacey's AAI & AAS. We hoped to get the test done here in the UK but this isn't possible as they can only test the forward and back movement of the neck and not the left and right. Therefore, we would need to go to Barcelona for this but would only be able to if the target is met.
We want to get Stacey the help, support and advice she needs and deserves to hopefully help her get better and to be able to enjoy her life again. At the moment given all the symptoms and pain she is in, she purely exists. Stacey herself has said she doesn't want to live another year like this never mind 5, 10, 20+.
As a family it has been hard seeing Stacey suffer for so many years. It has been such a difficult time. In January this year we were hit with another blow as Stacey's dad, my husband, was diagnosed with prostate cancer. He is just 54 years of age and the prostate cancer has spread to is bones and is therefore incurable. I now have two poorly people to care for. All he and all of us would like is to see Stacey better.
Can you help? Every donation, no matter how little will help!
To keep up to date with Stacey's story, follow us on Facebook. We post updates and photos. You can also send us messages, ask questions etc and we will always reply.
www.facebook.com/helpforstacey
*We do have a JustGiving account too along with PayPal and the option to make direct donations too, this is to give everyone a choice about how they donate should they wish*
Please share, #helpforstacey become a #staceysuperstar
Thank you for visiting our page.
We have decided to update the story as of today (4.4.19) as things have changed and developed since the fundraising began on 31st December 2018.
I am still fundraising for my Daughter, Stacey. She still requires tests and investigations that the NHS will not fund.
To date; thanks to the kind generosity of friends, family, strangers, supporters etc we have managed to get Stacey the upright MRI tests she needed in March 2019.
The MRI results were then sent to a consultant in Barcelona for review. He is a neurosurgeon and a spinal surgeon. From the MRI results he diagnosed Stacey with Atlantoaxial Instability (AAI) & Atlantoaxial Subluxations (AAS). It was most evident when Stacey turned her head left and right.
Along Stacey's health journey over the last 3+ years she has been given many different diagnosis including but not limited to; Mast Cell Activation Syndrome (MCAS), Connective Tissue Disease, Postural Orthostatic Tachycardia Syndrome (PoTS), Lipoedema & Lympodema.
Stacey's health and life have changed dramatically. She worked full time for the Local Authority but now aged just 31, was medically retired last year at just 30. She had a lovely home but has had to sell it and move back in with myself (her Mum) and her Dad.
We hope your kind donations will help us get the tests, diagnosis and possibly treatment she needs to get better. We still need to get Stacey;
- Autoinflammatory Panel Disease testing (it was suggested by a Professor in Rheumatology that Stacey may have an autoinflammatory disease considering the only treatment that seems to help is high dose steroids.
- Genetic Testing for EDS as it has been suggested that Stacey may have EDS due to all her issues/symptoms and the fact she has the linked conditions MCAS & PoTS.
- Digital Motion X-ray is needed to assess Stacey's AAI & AAS. We hoped to get the test done here in the UK but this isn't possible as they can only test the forward and back movement of the neck and not the left and right. Therefore, we would need to go to Barcelona for this but would only be able to if the target is met.
We want to get Stacey the help, support and advice she needs and deserves to hopefully help her get better and to be able to enjoy her life again. At the moment given all the symptoms and pain she is in, she purely exists. Stacey herself has said she doesn't want to live another year like this never mind 5, 10, 20+.
As a family it has been hard seeing Stacey suffer for so many years. It has been such a difficult time. In January this year we were hit with another blow as Stacey's dad, my husband, was diagnosed with prostate cancer. He is just 54 years of age and the prostate cancer has spread to is bones and is therefore incurable. I now have two poorly people to care for. All he and all of us would like is to see Stacey better.
Can you help? Every donation, no matter how little will help!
To keep up to date with Stacey's story, follow us on Facebook. We post updates and photos. You can also send us messages, ask questions etc and we will always reply.
www.facebook.com/helpforstacey
*We do have a JustGiving account too along with PayPal and the option to make direct donations too, this is to give everyone a choice about how they donate should they wish*
Please share, #helpforstacey become a #staceysuperstar
Organizer and beneficiary
Bernadette Parker
Organizer
Stacey Parker
Beneficiary
