Please help The Breadiy Family
A real story by a mother that suffer too much...
It was a tough year for my family
We went from having a baby to beating cancer and thinking how hard and tough life can be, we didn’t know the worst was yet to come, we are a family of 6, Haitham Bready is the oldest of the children at the age of 16 he would watch his siblings as his father would undergo chemotherapy, he would do everything he could to help his father get in remission.
On January 2017, his father did as happy as he was, something was different he would feel not well, soon he would consistently having headaches, have lack of sleep, and more dangerously recurring seizures.
After numerous of hospital stays it was clear as day the doctors could not find out what was going on with Haitham, soon after we took him to Cleveland clinic were upon first the first visit they had told us Haitham looks to be suffering from Lafora body disease, they would need to confirm with genetic testing and that would take 6 weeks to find out-out, well 2 weeks later the test result confirms our worst fear Haitham has Lafora body disease
Lafora body disease is a terminal form of epilepsy that offsets at the age of adolescents, children will be normal teenager prior, which certainly was the case with Haitham.
At the edge of us finding out of this devastation of news, we also found out that there is a cure Lafora Disease initiative and they are at the edge of clinical trial hoping to cure an awful disease that is terminal at this time.
We found out that that when the clinical trials are available we as a family would need to fly out to get this treatment every 3 Months for a couple of years and we also need to move into a place that is wheelchair accessible as Haitham has lost his mobility to this disease and as a family I as the mother have to stay at home and take care of him, as not even the doctors know what to expect with this disease we have more experience since we take care of him all day.
Unfortunately this disease is extremely rare there are only 200 children in the world are affected by this disease so there are no foundations any help out there since there are so little people affected by this disease, it is upon us to fundraise for my sons cause, we have made countless try’s in fund raising for my son and his needs as recently as April and for the second time no one from this community has shown up, we even got wxyz desk to help us with spreading awareness, and it was a complete disappointment, we have reached out to every organization and even the mosque and unfortunately have received no support wot h was a very discouraging tours but for Haitham’s sake we keep trying as we feel there is reasonable hope for my son , we are reaching out to the community at large to help us with spreading the word of Haitham cause as we are sure if more people knew Haitham story they would be compelled to help.
For there to be hope that my son to be a part of a cure of a disease, so devastating and aggressive is what any mother would want and I hope to be connected with our community that would rally around Haitham in her s time of need, to give a terminally sick child hope that he would not have otherwise is not a cause but a human right that any mother would fight for her son and I am reaching out to you hoping you Willard my sons cause your cause, to advocate and fight for Haitham as I have for the past 11 months.
And find it in your heart to bring hope to Haitham and help meet he needs of a child that needs so much at a time where there is so little out there, all I ask is for all my brothers and sister to give, share and advocate for my boy as it hurts my heart every day watching my son suffer, and to also have the burden of all these needs that can help Haitham fight and hopefully beat Lafora that is I ask of from all of you in this month of Ramadan the go fund me link is below, https://www.gofundme.com/jessicanovakov
This is Haitham after the manifestation (Picture)
Please consider helping Haitham”s cause..