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Josiah Maingi Kinyota

Thank you for supporting Josiah to keep smiling and being with us. Be blessed

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Josiah...our little warrior...

Our nephew Josiah recently celebrated his fifth birthday on the 29th of July 2020. But his life has been anything but rosy so far. He faces a fourth brain surgery in the next few weeks due to a recurrence of a rare type of brain tumour that was first detected and removed in 2017 when he was only two years old.  Two years later, in July 2019, Josiah celebrated his fourth birthday in hospital after the tumour recurred and he needed a second surgery.

This will be Josiah’s third surgery in 2020. In January, he was very sick and he had to undergo emergency surgery to relieve pressure on his brain caused by fluid buildup due to the tumour. He successfully underwent surgery to remove the tumour; and then proceeded to have 30 sessions of radiotherapy which ended on the 17th of April 2020. Post-surgery, just like the other 3 times the tumour has been removed, scans on his head indicated the surgery had been successful (in removing the mass). But alas, a follow up MRI done 3 months after he finished radiotherapy on the 17th of July 2020 indicated the recurrence of the tumour.

Our family now faces an ever more difficult time, if we do nothing quickly, the tumour is certain to keep growing and will spread to other parts of his body. Surgery represents Josiah’s best hope as it the best option for the type of tumour, a rare type of brain cancer called ependymoma. The costs of the surgery at Aga Khan hospital are estimated to be Kenya Shillings 1.5 million. We are once again asking you, to support our family as we fight to keep our precious boy with us. Throughout his tribulations, the smile has never left his face. He remains our little warrior: brilliant, twinkle-eyed, ever smiling. A fighter.


Josiah's surgical journey begun in 2017 when, barely two years of age, a little bump on his head plunged our whole family into the world of ependymoma - a type of brain tumor more likely to occur in children.  A CT scan done then showed a tumor towards the back of his brain, large enough to obstruct the flow of the fluid in the brain, and to increase the pressure in the head. He was in terrible pain because of it. The following is a brief time line of events so far...

August 2017 (age 2) :  Ependymoma (brain tumor) confirmed on CT scan of the head

August 2017 (age 2):  First brain surgery with total resection (successful removal) of the whole tumor.  Josiah is deemed too young for chemo/radiotherapy 

December 2017: Normal brain MRI

July 2019 (age 3):  Recurrence of brain tumor confirmed on CT scan after Josiah started vomiting and complaining of headaches again. 

July 2019 (age 3):  Second brain surgery with successful tumor resection.  A week later, Josiah celebrated his 4th birthday while in hospital. 

November 2019 (age 4): Normal brain MRI

Jan 2020 (age 4):  Recurrence of tumor noted on CT scan done due to Josiah's worsening symptoms during the holidays

Jan 2020 (age 4:) Josiah is very sick. Emergency shunt done to relieve the pressure in his brain. 

January 2020 (age 4): 3rd brain surgery, again with successful tumor resection. 

March 2020 (age 4): Josiah commences radiotherapy at Aga Khan hospital. Many well-wishers join to help the family through m-changa

April 2020 (age 4): Josiah completes 30 rounds of radiotherapy.

July 2020 (age 4): Josiah undergoes a CT scan on his head as part of the monitoring of his health post-surgery. Unfortunately, the scans show a recurrence of the tumour.

July 29th 2020 (age 5): Josiah celebrates his 5th birthday.

August 2020 (age 5): After review by a neurosurgeon the family is advised to let Josiah undergo another surgery to prevent complications that are certain if the tumour is not removed soon. 


"Start by doing what’s necessary; then do what’s possible; and suddenly you are doing the impossible” (St Francis of Assissi)

 

 

 

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Philip Munyambu Kinyota    -    2547222XXXXX