#dandy walker malformation

[iamsomeonestrong]

hey there! my sister has dws along with another rare congenital disorder and i just wanted to drop in and say that it's cool that you talk about it (as i'm sure you're aware, i was able to go through tumblr's entire dandy walker tag in five minutes). i appreciate the work you're doing and i hope you have a lovely day.

Hi! Thank you so much for this lovely message!

I was surprised that there were any posts at all when I first searched the tag if I'm being honest, so it's really nice to be able to talk to people like yourself!

When I set up this page I wasn't sure if anyone would reach out, so please feel free to drop by whenever you need to chat!

Hope your sister is doing well, I'll be thinking of you both x

[mamas4healthcare-blog]

Thank you for having us here. If I had to write to politicians (which I plan on doing), I would say something along these lines:

This is my daughter, Natalie. She is four years old and is a spit fire. She is my entire world. However, she is a poster board for pre-existing conditions. Some of her conditions are: cutis laxa, dandy walker malformation, epilepsy, dystonia, she has a feeding tube, failure to thrive, hypotonia, and more. Her “problems list” is 2.5 pages long, she sees 16 specialists, physical therapist, occupational therapist, and pool therapist. She is on 10 medications a day. She also has equipment we rent each month such as cough assist, vest machine, suction machine, and a feeding pump.

The AHCA literally threatens her life. Currently she is on Medicaid because we adopted her from the foster system. However, block grants could cut her potential to funding. If we either lost her Medicaid or the majority of her Medicaid, we literally couldn’t afford her monthly medications, therapies, or specialists. If I had to go to bare minimum items each month, it would still cost me $10,000 a month to simply keep her alive, that isn’t even considering quality of life things. All of her pre-existing conditions would make her exempt from pretty much any private insurance company on the market under AHCA. She is my fighter who already has fought so hard, she shouldn’t also need to fight for the basic right to medical care to keep her alive.

[roamwithahungryheart]

Rare Disease Day

Today is Shrove Tuesday. It’s also Rare Disease (and Disorder) Day. I was born with Dandy-Walker malformation with atrioventricular septal defect & tetralogy of fallot, and although I’m one of the gals that got off lightly on the severity scale for these conditions, there are others out there who have it much harder. Open heart surgery looms large and often in my future. Near future operation pending. And although I’ll never end up in a wheelchair, I’ll never have to  have a shunt operation...I still have all the other symptoms to deal with. A lifetime of headaches, dizziness, mal-co-ordination, seizures (that could strike at any time, of any type - and there are 41 different types!), chest pains....but I do my best to take it in my stride. As far as I’m concerned, I’m normal. I can get through each day, no matter what challenges life, or medical mishaps may throw at me. In short,  “You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.” - Eleanor Roosevelt Today, I encourage you all to be strong through all your hardships. You are stronger than you think x

[tohamy-4d-scan]

(via 4D Ultrasound - Obstetric Ultrasound - Fetal Neurosonography - Dandy-Walker Malformation (DWM))