The 5 Things Parents Of Children Diagnosed With VWM Want You To Know
September is Leukodystrophy Awareness Month. Vanishing White Matter Disease (VWM) is one of the 52 different types of leukodystrophies. We all need to be aware of these rare disease and help fight this battle.
- Be positive. Smile. Be friendly. Everyone in a family affected by VWM could use a hug.
2. VWM research is severely unfunded. It is up to the affected families to raise the funds to save our children.
3. They need you. The horror of the diagnosis may make you uncomfortable and you may not know what to say. But, they need you now more than ever before. Just be there for them.
4. Don’t ask if they need help, of course they need help! Drop off a gas card to help offset expenses. Bring them coffee. Take them out for a drink. Take the initiative and help. Don’t forget about the siblings either. They need extra love and attention too.
5. YOU CAN HELP. Every single one of you reading this has the power to help. If everyone donated a few dollars they normally would spend on a drink at Starbucks — that would make a tremendous difference in the fight against VWM. You can donate to VWM research here — https://www.aftau.org/vwm or here -https://www.crowdrise.com/FindaCureforVWM or
www.savingchloesaxby.com . You can do the #VWMRainbow Challenge .
I challenge you to make a difference this month in the fight against VWM. Do it for Isabella, Chloe, Sam, Reed, Bella and other children around the globe. Do it in memory of children like Isaiah, whose mom couldn’t take a back to school photo this year after Isaiah died of VWM on June 29,2016. Do it for all the children who have yet to be diagnosed. Make a difference this month, even if it is by sharing this note…