Hospital hope for Shadoni

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  • Frustrating experience: Masante Maryam with son, Shadoni Place (Photograph by Akil Simmons)

    Frustrating experience: Masante Maryam with son, Shadoni Place (Photograph by Akil Simmons)

  • Intelligent and resilient: Shadoni Place (Photograph by Akil Simmons)

    Intelligent and resilient: Shadoni Place (Photograph by Akil Simmons)


What is ITF?

Idiopathic thrombocytopenic purpura is a disorder that can lead to excessive bruising and bleeding.

• The bleeding is a result of low levels of platelets, the cells that help blood to clot

• In rare cases, the number of platelets can be so low that dangerous internal bleeding may happen

• ITP, which affects children and adults, is caused by the immune system mistakenly attacking and destroying platelets. However, what triggers this is unclear

A mother is raising cash to take her sick six-year-old son to Britain for treatment for a rare blood problem that could cause massive internal bleeding and death.

Masante Maryam said that her son, Shadoni Place, who has suffered severe health problems since he was 2, needs intensive treatment that could take up to two years.

She has set up a GoFundMe page to raise an initial $5,000 to help to cover expenses for the move and will hold a fundraising event this weekend.

Shadoni’s blood disorder — called idiopathic thrombocytopenic purpura — causes a low level of platelets in the blood which are vital for clotting and can lead to severe bleeding.

Ms Maryam, a mother of three, said island doctors had exhausted all testing options in Bermuda and suggested that Shadoni’s problems stemmed from a virus.

However, Ayesha Peets Talbot, Shadoni’s doctor since birth, suggested more specialised testing should be done overseas.

Ms Maryam said: “They couldn’t figure it out; they went as far as spinal tapping to figure out what was making him sick.It went on for a few weeks. I got very frustrated and went to his private doctor, who was not satisfied.

“Over the weeks, his platelets continued to deplete — they had us go through a hematologist looking at blood cancers and things that change the blood cells, but we couldn’t find anything.

“She got us on a plane to Boston Children’s Hospital, where they informed us that our child was critical.

“Had the ITP gone untested, he could have bled himself out internally. They managed to stabilise him, and we came back home.”

In addition to ITP, Shadoni also has mercury and arsenic poisoning, which could be a result of his body’s failure to eliminate toxins.

He also suffers from vitamin and mineral deficiencies, and an infection of the fungus candida in his digestive system.

Ms Maryam said: “He has extremely high levels of mercury and arsenic in his blood and deficiencies of most vital nutrients.

“His digestive system is overrun with fungus and bacteria — he is not digesting his foods properly.”

She added: “We don’t know how he is getting poisoned, the rate in which he is absorbing it or why his body continues to absorb it rather than identifying it as a toxin.”

Ms Maryam said: “We have had the water tested at home and at school and none of my other children are affected.

“Our bodies usually identify toxins like these and get rid of them. His doctor and I are under the belief that maybe his body doesn’t do that.”

Shadoni suffers complications, including severe migraine-type headaches, nausea, vomiting, high fevers and organ function problems.

Ms Maryam said: “He is an extremely intelligent and resilient child but he has missed about 2½ months of school this year — even when he gets a cold it is very serious because his immune system is so compromised.

“But he was on the honours list and received the most honours for P1 at Victor Scott Primary School.

“He has a lot of life in him. He is very helpful. He has been sick for so long that he just works through it most days.

“The week of his birthday, he ran a ridiculously high fever and cried all week. He kept saying ‘mommy, I just want to go to school, I want to see my friends, I hate being sick’.”

But the family are now going through a referral process and have contacted three hospitals, including the world-famous Great Ormond Street Hospital for children in London, to try to help Shadoni.

Ms Maryam, who lost her job and health insurance in 2015, just before she became pregnant with her third son, now aged three, was unable to return to Boston for more tests on her son.

She was later ruled unfit to work because of her own health problems and forced to apply for financial assistance.

But, because she wants to move her three children and her partner, Shawn Place, to Britain to avoid splitting them up for an extended period, financial assistance will not be available.

A fun day fundraiser for Shadoni will be held at Somersfield Academy on Sunday from 11am to 5pm.

Ms Maryam has organised play castles, face painting, archery, mini-golf and raffles and all the proceeds will go towards Shadoni’s treatment.

Masante Maryam can be contacted via phone on 704-9371. Anyone wishing to donate can go to the Shadoni Place Medical Fees GoFundMe page. To view the fundraising certificate for this cause, click on the PDF under “Related Media”

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Published Aug 14, 2018 at 8:00 am (Updated Aug 14, 2018 at 11:48 am)

Hospital hope for Shadoni

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