Distraught Detroit mother says she must endure watching second young son die from disease so rare it only affects 1 in 10 million
An ultra-rare disease is once again devastating a Michigan mother who says she has already lost one son to the illness and is now preparing to lose another.
Azeza Kasham’s 16-year-old son Gehad was diagnosed with Lafora 10 days after his brother Haitham Breadiy passed away from the disease in October of 2019, according to the Arab American News.
Lafora is a progressive neurological condition that causes seizures and intellectual decline in adolescents, which leads to death within 5 to 10 years of symptoms, and currently does not have a cure.
Unfortunately, the illness occurs when both parents unknowingly carry a faulty gene that they pass to their child and affects roughly one in 10 million people, according to Fox News.
‘Gehad was a normal kid, just like his brother (Haitham),’ Kasham told Arab American News.
‘One day, he just fell on the floor and had a seizure. Doctors then told me the disease is genetic.’
Gehad, who is also known as Gigi, is in the late stages of illness and relies on a wheelchair as his 17th birthday approaches. His mother is doing everything she can to cherish the time he has left, according to a fundraiser.
‘Ultimately, I’m going to lose him,’ Kasham told Fox News. ‘I want to feel like I did everything I could for him, and right now I don’t feel that way.’
Azeza Kasham’s 16-year-old son Gehad was diagnosed with Lafora 10 days after his brother Haitham Breadiy passed away from the disease in October of 2019
Gehad, who is also known as Gigi, is in the late stages of illness and relies on a wheelchair
She noted that the only pharmaceutical company researching a cure for Lafora recently terminated the project.
‘I’m battling this disease. I’m also battling the pharmaceutical company that abruptly stopped the medication. And I’m battling his needs,’ said the mother.
The family is struggling to keep up with bills, including their mortgage, as they go through such a difficult time, according to a GoFundMe set up in efforts to provide ‘comfort and care for Gigi’s Final Days’.
Donations will be used to make the boy’s home more accessible, as he currently bathes in the garage with hot water because the family’s shower is not handicap-accessible.
‘A wheelchair-accessible van and home modifications would dramatically improve his comfort and allow the family to move through daily life with more dignity and safety,’ read the crowdfunding.
Additionally, the money raised will help cover medical expenses and a wheelchair-accessible van. It will also go toward mortgage and essential bills, so Kasham can focus on being present with her family.
The family’s home is not handicap accessible and including the shower forcing his mother to bathe him in the garage using warm water
Kasham is struggling to keep up with expenses however a GoFundMe set up for the family has nearly reached its $600,000 goal (Hasham and Haitham Breadiy pictured)
The GoFundMe has nearly reached its $600,000 goal and has received over 15,000 donations.
‘I often think about this one being one of the worst diseases that you could have,’ Dr. Nancy McNamara, the division chief of Pediatric Neurology at Corewell Health, told Fox News.
Many were heartbroken by the tragic story and took to social media to share their condolences with Kasham.
‘I wish I could give more. Azeza showed me kindness when I worked alongside her at her job,’ one wrote.
‘She takes care of everyone and is one of the kindest people I’ve met, despite everything she’s been through.’
Another added: ‘I am so very sorry you and your family are going through this yet again. Prayers for you and all who are touched by this!’
‘I’m sorry that I don’t have more to donate, but it brings me so much warmth to see the amount of support the beautiful people out there have provided and how God is working,’ a third said.
‘Your family will always be in my prayers. God bless and enjoy every precious second.’
