On behalf of Sami Berry, we are asking for your help, for our dear friend. Sami is one of the funniest, kindest, and most loyal people you will ever meet. Her only flaw is that she struggles to accept help from others when she needs it, so if she is reaching out for help, you know she genuinely needs it.

Sami’s Story:

Sami suffers from several chronic health conditions, including Ehlers-Danlos syndrome (EDS), Epilepsy, Postural Orthostatic Tachycardia Syndrome (POTS), and Severe Myalgic Encephalomyelitis (ME), amongst others. Unfortunately, recently she has been on the receiving end of several failures in her care, from the NHS.

Sami has been in the hospital for months, starting in November 2022, because she was unable to eat and keep anything down. Originally, she was given an NG tube, which was then changed to an NJ tube when Sami was still unable to keep her nutrition down. After several weeks of still struggling to keep any feed down, she was finally given a PEJ tube. After successfully keeping some feed down, Sami was then discharged back to the community. However, after being at home for just over a week, several failings ended up with her back under the hospital's care. Since then, she has had weeks of not being able to obtain nutrition through the PEJ tube, until it was finally re-seated. This was only completed after Sami went public, via ME Action with her issues [1]. Unfortunately, during her last hospital stay, she was taken off the antiemetic medication that was helping her to keep her feed down. This resulted in her discharging herself from the hospital due to fears for her safety, and unfortunately, she is still having issues again with her tube and is unable to keep any feed down.

What we are Fundraising for:

This fundraiser has been set up to raise funds to help Sami fund Tertiary care, whether that is via private healthcare or provided by the NHS. However, consultations with different specialist consultants start at £250 for an hour only, and Sami is likely to need more than this, including several consultations and tests, possibly with more than one consultant due to her multiple chronic health conditions.

Sami, now due to weakness from the whole ordeal, is now struggling to get about and unfortunately, a manual wheelchair is not likely to help. She would therefore benefit from having an electric wheelchair to assist and help her get out of the house and attend medical appointments.

All funds raised will go straight to Sami Berry’s bank account and It will be used for Sami’s medical treatment and medical aids.

A Note from Her Friends and Family:

We thank you for taking the time to read our fundraiser, Sami and her friends and family are determined to continue to raise awareness and find the right care for her and others that suffer from Severe ME.

Thank you for whatever you can give.

Sami’s Army (Facebook Group)

Further Reading:

[1] ME Action (February 2023) Women with Severe ME and EDS Starving to Death in NHS Hospital. Available here.

The Times (February 2023) ME patients ‘risk dying of starvation’ under NHS care. Available here.

Canary (February 2023) A woman living with ME and EDS is dying in front of her husband’s eyes in an NHS hospital. Available here.