Filip Kwansy, seven, has battled a range of conditions since he was two and is now only receiving palliative care to make him comfortable as cancer takes over his tiny body.
Filip, from Colchester, Essex, has been living in London’s Great Ormond Street Children’s Hospital since being diagnosed with juvenile myelomonocytic leukaemia (JMML) – an accumulation of abnormal blood cells in the bone marrow – in September last year.
It follows a diagnosis of neurofibromatosis type 1 when he was two, from which he initially recovered.
Unfortunately, treatment to cure the adorable boy of his most recent illness, including a stem cell transplant and chemotherapy, has failed and the cancer has now spread to his intestines.
Despite barely being able to speak, this week he sent a personal thank you from his bed on the hospital’s Fox Ward, to the people who are giving donations to help make his dying wish possible.
He said: “Thanks for helping make my wish come true.”
His dad, Piotr Kwasny, 40, knows his son’s time is limited and is now desperate to raise the estimated £6,500 he needs, to fund his son’s burial wish.
He said: “He says that I’m his angel that is looking after him here and that his mum will look after him when he is in heaven.
“I don’t know how well he remembers his mother, as he was so young when she passed away, but he has visited her grave when he was well enough to speak to her.
“Filip wants to be buried with his mother, so we will need to organise that locally and re-bury them together.
“This is just a very stressful and distressing time for all of us. I did not imagine that I would have to bury my child…you should go before your child.”
Piotr also suffers a range of illnesses, including spina bifida, diabetes and high blood pressure, he cannot work, so cannot afford to take Filip to Poland on his own.
And Filip is simply too ill to travel to Poland while he is still alive.
Piotr added: “The doctors do not know how long Filip has left.
“There is a bell in the Fox Ward outside Filip’s room. Ward patients ring the bell three times when their treatment is done and they are leaving. Filip, my son, will never get to ring that bell.”
Filip’s mum, Agnieszka, died when she was 33 on November 12, in 2011, from cancer.
She is buried in her home village of Wadowice, Poland, the same location where she married Filip’s father in 2009, and where her boy hopes eventually to join her.
Piotr, who has now remarried and has a two-year-old daughter and two step-children, told how his late wife died shortly after developing sarcoma, a cancer of the connecting tissue.
He said: “My wife had a large growth on her neck, I believe her lymph nodes, but we didn’t know what that was.
“She collapsed in the street one day and was taken to hospital where they did an emergency operation to remove it which lasted for six hours.
“She was diagnosed with sarcoma. The cancer spread throughout her body. She only weighed 20kg when we lost her.”
It was a devastating blow for Piotr when, just a year later, Filip, then two, was diagnosed with neurofibromatosis type 1, a condition causing tumours to grow on the nerves. Filip, seve, has previously fought off neurofibromatosis type 1, which caused tumours on his nerve endings
Filip recovered well, but his health took a downward turn in September last year.
His dad said: “He started having nose bleeds and his legs were hurting.
“I took him to the doctor here and they said that there’s nothing wrong with him and that perhaps he is tired.
“I insisted that they need to do some more tests, because he was already diagnosed with type 1 and I knew there was something wrong.
“I think all parents know when there’s something wrong with their child.
“They ordered more blood tests and discovered that he was suffering from severe anaemia and juvenile myelomonocytic leukaemia (JMML).”
Filip had chemotherapy in hospital in Cambridge in September and November last year, but it did not work.
In November he had stronger chemotherapy, but that also failed.
Then, in January he received stem cell transplants, which again proved unsuccessful.
But the final blow came earlier this month when doctors said there was nothing more they could do for Filip except manage his pain.
His devastated dad said: “His liver had stopped working so he also receiving plasma every other day.
“His abdomen has collected a lot of fluid and is enlarged, which causes him lots of pain and pushes up on his lungs, so he has difficulty breathing.
“He cannot eat as he throws up. He is either drowsy or screaming in pain.
“It’s heart-breaking for me to watch. He knows that he is dying and that there’s nothing they can do for him. He knows that he doesn’t have much time left, we both do.”
To donate to Filip yu can visit his Just Giving page here.
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