THE family of a mother-of-four who has an incredibly rare and aggressive form of cancer have launched a bid to raise thousands of pounds so she can receive life-saving treatment in the US.

After being diagnosed with smarca4 deficient thoracic sarcoma in July Lyndsay Johnson was told she may only have a matter of months to live.

The 38-year-old is receiving palliative immunotherapy and chemotherapy treatment at Colchester Hospital, but doctors are not sure how her body will respond as the cancer is so rarely seen in Britain.

With the help of supporters, travel consultant Lyndsay hopes to receive specialist treatment at the MD Anderson Cancer Centre in Texas.

But her family need to raise £16,500 for an initial assessment from the American clinic so a treatment plan can be created, and face raising tens of thousands of pounds more in the future for her care.


Lyndsay, who lives near Abbey Fields in Colchester, was first admitted to hospital in January due to a collapsed lung.

She said: “I thought I was having a heart attack and I was taken to Basildon Hospital.

“I was in there a week for surgery but the operation was cancelled twice.

“I was sent home from hospital with a chest drain but my lung collapsed even more at home. I was taken to A&E at Colchester Hospital and I was transferred to Basildon again.

“I was in hospital for two weeks and eventually a surgeon took on the operation as an emergency.”


Lyndsay was sent home to recover and for the first few months things were going well.

But by May she was deteriorating and had to be admitted to hospital the following month as she was coughing up blood.

A CT scan revealed what was believed to be a haematoma within the tissue, leading to further emergency surgery.

But less than a week after being released from hospital again she was readmitted and it was discovered the mass in her chest cavity had doubled in size.

Lyndsay, who is a Cub scout leader in Colchester, said: “I was in Basildon Hospital again for a week and then I went home again.

“But I soon ended back at A&E. I had another operation to remove it once again because it had been diagnosed as a haematoma.”

During this second operation a lymph node was removed and sent off for biopsy. Doctors now believed Lyndsay had lymphoma but another CT scan soon revealed the extreme nature of the cancer she was battling.


Lyndsay said: “This country hasn’t really seen this type of cancer.

“It is extremely aggressive and it can grow between two and four centimetres in a day.

“I am in pain with it all the time at the moment.”

The former Alderman Blaxill School pupil has been told the only treatment she can receive in Britain is palliative care, which will hopefully help prolong the time she has with her loved ones.

But after being in contact with the Texas clinic, Lyndsay said she has new hope for the future.

“The centre in Texas have dealt with multiple cases before and they are well advanced of what we have over here,” she said.

“This first fundraiser is the first step and they have told me they could treat me.

“I do feel more positive and I have hope now. My children have also been given hope by the news.

“I have had my breakdowns but every time I cry I make myself a bit stronger afterwards.”

“The support I have had from people so far has been incredible.”

Her husband, Nick, and children Daniel, 16, West, 16, Sommer, 15, and Dakota, ten, are helping run the fundraising campaign along with her devoted family.

They have so far been overwhelmed by the support they’ve received, collecting more than £12,000 in just four days.

But more is needed to get Lyndsay the life-saving treatment she desperately needs.

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