Khymir Martin

WE NEED YOUR SUPPORT!

Khymir is a 5 year old boy born in Pennsylvania, who was diagnosed with X-linked Adrenolukestrophy in October of 2018.

Adrenolukestrophy is a severe brain disorder and mainly affects boys and men. There’s no cure yet for it, but a diagnosis early in life may keep it from getting worse. ALD causes severe damage to your nervous system and the adrenal cortex..

Because the disease causes changes to the brain, Khymir has been tested regularly since he was 1 year old.

We received the worst possible news in April 2023, the MRI detected changes. These changes can cause him to lose brain functions that impact his quality of life including, memory issues
learning disabilities, withdrawal or aggressiveness, vision and hearing problems, difficulty walking and more .

If not treated, cerebral ALD can lead to more severe symptoms and quickly worsen, potentially leading to loss of consciousness and early death.

One of the treatments to help slow down the progression of ALD is a bone marrow transplant, but unfortunately, a match for Khymir was not found.

CHOP decided that gene therapy was an alternative and Khymir began treatment that used his own cells to manufacture and create new ones in hope of stopping ALD from causing any more damage to his brain.

In September of 2023 Khymir received the gene therapy at CHOP. He was the first boy to ever receive this type of gene therapy at CHOP. Khymir is due for a follow up MRI in September and we are hoping for good news that the gene therapy has slowed the progression of ALD.

We need your help, as a mother of a sick little boy I have to spend a lot of my time at the hospital and being the advocate for my 5 year old son.

We have a lot of medical cost, co-pays, for appointments, test, spoecialist, transportation, it all adds up.

Addiitonally, I have not been able to work consistently since I received the call with Khymir’s diagnosis. Khymir also has 5 siblinghs that also need to be looked after.

We need your support. We are hopeful that the transplant with his cells will do its job and help Khymir lives his regular normal childhood life.
As you can see in the pic Khymir is such a boy who enjoys life and call himself the human Hulk. He is a such a funny outgoing and very strong boy mentally and physically. I cant live without him. His family loves him so much!

We are raising money for the nonprofit Help Hope Live in honor of Khymir to fund uninsured medical expenses associated with ALD.

We have chosen to fundraise for Help Hope Live in part because Help Hope Live assures fiscal accountability of funds raised and tax deductibility for contributors. Contributors can be sure donations will be used to pay or reimburse medical and related expenses. To make a tax-deductible donation to this fundraising campaign, click on the GIVE button. And please share Khymir’s campaign page on your social media platforms. Every donation helps.

For more information, please contact Help Hope Live at 800.642.8399.

Thank you for your support!