The Story Of Mwesigwa Isaiah – Genetics A Blessing And A Curse.

I delivered a healthy baby boy on the 27th of September 2010. He was such a blessing. At the age of nine months, my son was ill and his haemoglobin levels dropped so low.
We were always in and out of the hospital with severe pain, chest complications characterized by low haemoglobin levels and jaundiced eyes.

This continued until the age of two years when he had a severe attack that required a blood transfusion. It's then that my mother suggested that we test Isaiah for sickle cell. After screening at Nsambya Hospital, the doctor informed me that my son had sickle cell anaemia and that I needed to register him at the sickle cell clinic at Mulago for specialized management as this was a lifelong chronic disease.No one in my family knew anything about sickle cell disease when my son was diagnosed, and it had a devastating impact on my family. The news altered my family dynamics in a major way through living in denial for close to four months. I lost my job then in a law firm because I needed time to stay home and take care of Isaiah.

“I cried for days, I was devastated”. All sicklers I had known had long died and that scared me and my family. It was like a death sentence for my son. It was the most life- challenging truth of my lifetime. We started on a regiment on daily folic acid, penicillin, vitamins and monthly ant-malaria. My son has missed school attendance many times because of his sickling tendencies. At 9 years, he is only in primary two instead of primary four (Based on Uganda’s Education System). On 18th November 2017 The doctors were on strike and the sickle cell clinic Mulago was closed.....it was a nightmare, my son got a crisis and I took him to a local community clinic were he was mismanaged – unknown to me this was different. After 5 days of management, he lost his sight, his legs got crippled and got brain disorientation. The doctor told me that the boy was homesick and discharged us telling me to come back tomorrow, at this point I was confused, crying looking at Isaiah asking me with eyes wide open mummy where are you? and am answering am here....and he opens his eyes wide open where are you I can't see you....my son was now blind and I moved my son to another facility wailing on top of my voice, the doctor informed me that my son had got a stroke and immediately ran glucose which reversed the stroke and a cosquent brain CT- Scan revealed that my son had developed two brain infarcts (blood clots) resulting from a stroke.

The doctors from Mulago Hospital have advised me that my son is a high-risk patient and urgently needs a bone marrow transplant. The management currently is blood transfusion after every two weeks to maintain haemoglobin above ten to prevent an imminent stroke.
My family has been understanding and compassionate to my son albeit the heavy financial burden he has placed on them for his management. My son’s life has been a lifelong constant battle between being vigilant about your child’s health and providing a semblance of normalcy. Having a child with a chronic disease has interfered with my employment, spending long weeks in hospital has seen me get on the line with my employers many times losing jobs every now and then because of Isaiah's long hospitalisation

My appeal

There is no other way to put it - my 9-year-old son, Isaiah is dying and I lie on his bedside every night when he sleeps and my heart bleeds. My face burns from tears - Isaiah could be your child.my son is fighting a battle with an enemy within that no child should have to fight - infarcts in the brain.
As a parent, the conviction of being unable to rescue your diseased child from unceasing pain due to sickle cell diseases is the most agonising.

I have set out on a mission to find a cure for Isaiah's devastating condition- sickle cell disease-a disorder that causes episodes of severe pain, acute illness and progressive organ damage that leads to death.
This journey will not be possible without the help of thousands of incredibly kind and generous people around the world like you.

Isaiah is a tender-hearted loving boy who has had several outreach campaigns to be able to connect with other children with his condition. Even sickness did not deter him from his mission to break the silence against sickle cell disease.
I have created this Dolphin fund me account to help raise money for Isaiah's"s Bone marrow transplant.
It starts small, a simple act of kindness - but it can ripple out and create an ocean of prosperity in the world.

From the bottom of my heart, I humbly ask, that you share this link with friends and family and if possible paying up any amount will help.
The fight against sickle cell anaemia goes on and I know we are going to win this thing one day. Hardly anyone I know can say they don’t have a friend or relative that battles this terrible disease. My son is battling for his life with two blood clots. Am begging you to join the save Isaiah campaign in which we seek to raise shs one hundred and twenty million (Ugshs120,000,000 ) needed for the bone marrow transplant so he can have a shot at life again and live a healthy life like all other children.

Your support will ignite the fight against sickle cell –it will represent the hope that those who have lost the battle to sickle cell will not be forgotten –that those who continue to suffer from sickle cell anaemia will be supported and that one-day sickle cell anaemia will be defeated.
I dedicate the save Isaiah campaign to all warriors battling with sickle cell anaemia whose dreams invoke hope amidst despair, isolation and neglect – and to all of you who through thick and thin positively change the tide.
Thank you.