08/08/2024
Hi friends. It pains me to share some devastating news that has been heavy on my heart for a few weeks now.
Recently, my childhood friend Jing received a tragic diagnosis for her 4 year old son, Teddy. What seemed like a benign seizure at first, quickly turned into a nightmare as he was diagnosed with cerebral adrenaleukodystrophy, an extremely rare and fatal genetic disease.
Heartbreaking is an understatement; it feels cruel and unfair. Please keep sweet Teddy, Jing & Nick, and their family in your thoughts as they navigate the unimaginable.
Stem cell replacement therapy can be an option to slow the progression of the disease, but unfortunately CHOP determined that his condition is too advanced for treatment. The next step is to go to Minnesota this month for a second opinion 🙏
We are coming together to support this beautiful family. If you feel called to donate, please see the GoFundMe link in my bio. Every dollar will make a difference in helping them through this challenging time… medical expenses, potential treatments, respite care, medical equipment, and more.
(You can also Venmo me and I will make donation with everyone’s contributions next week. We did this for the earthquake in Turkey and it worked smoothly 🙏 Venmo: -Nurhan)
Thank you in advance for your love and support 💙 Jing, Teddy, and Family - we are all right by your side 🙏