Hi everyone,

In May/June 2018, Anne McCarthy and I plan on doing a 'tandem parachute jump' to raise money for two local ladies who are in need of help.

The first special young lady is called SASHA MATHEWS aged 18 from Harthill, Sheffield, whose life has been taken over by mast rare illnesses, (CHIARI 1 MALFORMATION, EHLERS-DANLOS SYNDROME (EDS TYPE III HYPERMOBILITY), POSTURAL ORTHOSTATIC TACHYCARDIA SYNDROME(POTS),MAST CELL ACTIVATION SYNDROME AND ERYTHROMELALGIA.

Sasha led a normal healthy, happy life up until the age of 8 when she began to catch every illness going but always recovered until the next bug. At the age of 11, Sasha began to suffer from bad headaches, vision problems and would sleep up to 18 hours a day at this point she was diagnosed with CHIARI 1 MALFORMATION for which she had decompression surgery (major brain surgery).

At the age of 12, Sasha returned to school after taking a year to recover and made up for lost time in her education but would suffer with excessive nose bleeds and extreme body temperature control (constantly hot). This would kick start the extensive list of symptoms she had, and she coped well despite catching every bug going around.

Sasha led a relatively good life for a couple of years until Christmas 2015 when she caught a bad viral infection which is thought to have triggered her Autonomic Nervous system to go wrong. This controls everything we don't have to think about... breathing, heart problems, heart rate, blood pressure, swallowing, digestion which then kickstarts a host of other health issues, Sasha can be lying flat on her back when her heart rate can race to 201, and then for no reason it will drop down to 37.

Over the past year Sasha has become totally bedridden because when she changes position in bed, attempts to stand/walk she feels so dizzy she faints. Room temperature is a major problem as her body temperature is out of control that she feels like she has a furnace inside of her. The fainting is so bad that Sasha has had to have a specially adapted wheelchair which tilts/reclines and keeps her legs raised and even with this as soon as she gets inside the hospital for an appointment she faints which makes any necessary examinations problematic.

The only time Sasha goes out of the house is to hospital appointments and sadly bed is the only place of relief, however the pain is really extreme as she has now recently been diagnosed with Ehlers-Danlos syndrome , Hypermobility type 3. This is a group of genetically inherited disorders that affect our skin, joints, blood vessel walls and pretty much all our body structure, yet we all look completely normal. The defect in the structure of collagen throughout her body is the problem, meaning that Sasha's joints have become very loose and her shoulder has now begun to dislocate.

Sadly, all of Sasha's joints throughout her body are painful, and the array of painkillers prescribed over recent months have not relieved her symptoms and have had side effects which worsen her symptoms. Sasha also suffers from gastic problems and is sick a lot of which she has to take antacid medication before eating/drinking. Sasha is now on a Gluten Free diet and very basic as she can no longer tolerate the majority of foods; she also has to consume 3 litres of water a day and is on a high salt diet which causes major bloating issues which also leads to sickness.

Sasha has seen many Specialists, majority of which don't understand or have the knowledge about theses conditions. Due to Sasha's posture being so severe, a nurse suggested a Professor Grahame who established the EDS Clinic in London.

Professor Grahame sent Sasha for an upright MRI in Kensington and has since referred her to Professor Mathias in London. Sasha has been informed that she will need an array of tests of which needs to be in London as this is the only hospital in England that carry out theses tests. As her illness picks up momentum, she needs the results of these tests as soon as possible so they can get her on the right medication to stop her from fainting and increase her blood pressure. Once she is stable they can start to begin the slow rehabilitation process which will be a lengthy one.

Sasha is aware that all her illnesses are connected and that the EDS is the most likely underlying cause. The specialists will also be testing her for a further rare illness which is often accompanies the above which is Mast Cell Activation Syndrome as she gets a rash which appears daily and when she is about to faint her right arm changes colour to purple mottled effect, her throat tightens and a red rash appears all over her body. To much histamine is being produced in her body. Further information is available about Sasha on her facebook page 'Sasha's cause'.

Sasha's treatment is not available on the NHS and is only available in a specialist hospital in London. I would be very grateful for your support in helping Sasha.

The second special lady is EILISH JENNINGS, aged 36 from Sheffield and is a mum of 3 wonderful young children, Elsie 4; twin boys Billy and Tom, who have just turned 2; and partner of eleven years to Simon.

On 21st March 2018, Eilish and Simon were on their way to get results from a biopsy. Eilish's oncologist invited her into her room and proceeded to tell her that her cancer had returned. Eilish was half hoping to learn that the discomfort in her shoulder was a side effect from previous radiotherapy, but she was told that chemotherapy was the only plan of action the NHS have for her and it's not a cure.

Eilish and Simon are seeking more proactive treatment for the long term and that means going abroad for treatment. How do you process the thoughts of not being they for your children?

Eilish was diagnosed with Beast Cancer in March of 2016 when she was 34 weeks pregnant with the twins. Once Billy and Tom arrived, she immediately had to go through treatment, rather than return home. She had to go through chemotherapy for the next 18 weeks, which she can confirm is as bad as you've heard. She also underwent a double mastectomy and reconstruction to try and remove any cancer from her body. She then went through radiotherapy for a further 6 weeks.

In October of 2016 she was advised that the treatment had been successful. Fast forward to Wednesday 21st March 2018, the twins second birthday, Eilish has just been told that her cancer had returned. They didn't catch this part of the cancer in the operation. It is not removable because of its location and any chemotherapy will only slow its growth. This time the NHS can not cure the cancer.

They have been recommended that the Hallwang Clinic is one of the best in the world offering the latest in cutting edge treatments that the NHS simply can not provide. The clinic is not promising the world, or selling impossible dreams. They have a record of extending and saving the lives of people with conditions just like Eilish's.

Eilish will eventually need to travel to Europe for an initial consultation. Following this, her long-term medical plan will be drawn up. Initial consultation, with all the travel and accomodation is estimated to cost £10,000. Her treatment plan for 2 - 3 weeks is estimated at £100,000. Extended treatment plan for 1 year will be in the region of £300,000. As you can see these are enormous amounts of money.

Once your options in the NHS, or by anyone in the UK run out, you quickly realise that private medical care is extremely expensive.This treatment could keep the cancer at bay, as the clinic has patients who continue to live long, good lives. But ultimately Eilish just wants more time, time with her children Elise, Billy and Tom and of course Simon. Further information about Eilish Jennings is available on her facebook page 'Eilish's Cancer Treatment Fund'.

I would be very grateful for your support in helping Eilish.

THANK YOU.

Tracy Webb