View Full Version : small world

May 28th, 2004, 10:33 PM
Chelsey met a friend at Camp Barnabas last summer that she emails and talks to every so often. Well, tonight Ali's mom called me to see if Chelsey could come and visit Ali this weekend. This was the first time I had spoken to Ali's mom, but I knew she had a special needs child because that is what Camp Barnabas is all about. Anyway, we were exchanging stories about our kids (by the way, her daughter has Anglemans Syndrome) and I was telling her about Kraig and MPS. Then she said, "is that anything like Hurler Syndrome" I was floored that she had heard of MPS, so I explain that Kraig has MPS II, similar to Hurler. Then she says, "can he get ERT or a BMT". WOW, I was thinking that someone actually knows a little about this disorder. Turns out her co-workers 13 month old child was dx with Hurler Syndrome a few months ago and is now about 100 days post transplant (transplanted at St. Louis Children's Hospital). I gave Michelle, the web address to this forum and told her to pass it on to her co-worker.

Priscilla Raftery
May 28th, 2004, 11:45 PM
Small world indeed! More and more, mps is getting "out there"! I hope Michelle's co-worker joins us here on our island :) ! Priscilla

May 29th, 2004, 12:16 AM
I actually when I worked at a day xare in this tiny little town met a girl who was 6 i think who had Sanfillipo syndrome. Her and her mom speak almost no english and when I mentioned the internet to her mom she just looked at Me like I was nuts, so I got the "no comprendo" on that one and I speak about enough spanish to get myself into trouble and dig myself back out and leave with just an ounce of dignity *giggles* But anyhoo

Thats just MY its a small world because this lady was surprized I knew anything at all and it was kind of weird explaining to her why and how I did know so much about it, then again I research rare disorders even when I dont know anyone who has it because eventually when I go into special ed I dont want to go huh? your kid has what?

Ok if I talk anymore i'm going to be rambling,

May 29th, 2004, 07:35 AM
That is cool that someone knows about MPS AND is not associated with someone who has it!!!!Maybe all of our big mouths :D talking about MPS all the time is starting to pay off????? I hope that mom will find the courage to come by the forum and see just how fun we can be.

May 29th, 2004, 10:17 AM
That is incredible!!! Aaron was diagnosed with Hurlers by a genetic doctor from St. Louis University who told us we would have to have his transplant in Minnesota because no one there knew anything about Hurler Syndrome. :? I am so happy that this family did not have to travel so far for treatment and a little confused too. Oh well, alls well that ends well!!!!!

May 29th, 2004, 07:27 PM
When Dr. Wahl was at Cardinal Glennon, I know that she transplanted another child dx with Hurler, that was about 2 or 3 years ago. Sam is doing really well, he lives in Carlinville, IL. I also know of another child dx with Hurler that was transplanted at St. Louis Children's Hospital, I briefly met this family at the National MPS Society Conference in St. Louis last April. Here is Breanna's story (http://www.stlouischildrens.org/articles/kids_parents.asp?ID=950), this is taken from the St. Louis Children's Hospital website. Breanna is from Flora, IL.

May 29th, 2004, 08:01 PM
I am in the process of trying to contact Breanna's family. Incredibly they only live about 20 minutes from us. I am super excited to talk to her parents. If anyone finds out any further information on her please let me know.

May 29th, 2004, 10:32 PM
Trisha, I hope you are able to make contact with Breanna's family, I don't know a much about them, I did not get the chance to really speak to them much at that conference. I'm really sorry that I didn't tell you about them sooner.

June 2nd, 2004, 02:11 PM
I got in touch with Breanna's Nurse Cordinator and she is going to pass my phone number along to the Fancher Family :). My husband says that the town the Fancher's live in is only about 20 minutes South of here. I hope they want to contact me. I would love to see Breanna or at least keep updated about her. The Nurse said she doesn't think they have a computer so she will not be able to join the forum unless she is at someone else's house :( . The town they live in is mostly farm land and I don't think they even run cable out that far :? . Anyway, I will let you all know if I come in contact with them. Thanks for bringing her to my attention Kris!!!

June 2nd, 2004, 03:48 PM
I just talked to Breanna's Mom on the phone. Oddly enough she had her transplant back in 2001 and is now 4 years old and doing quite well!!! She is going to have tubes put in her ears and spinal fusion is scheduled for September of this year. They do not have a computer so they can not log onto the forum. Apparently the article for the website Kris has linked above is outdated. There wasn't a date on the article so I too assumed she was about 2 years old. Oh well, we had a nice long chat anyway.

The Rea Family
June 2nd, 2004, 04:11 PM
It is great that you met someone who knows of this disease.
I have yet to meet anyone who has ever heard of it.
When I tell someone what Chris has, I get looks of total :? .
It's about to the point, that I feel the need to make up some business cards, or fliers detailing this disease, and when someone asks what's wrong with him, I can give them one, and say "read for yourself".

June 2nd, 2004, 05:17 PM
Funny that you should mention that Carrie,

That's exactly what I do!
I have the MPS pamphlets in my car and my purse and at home so when I do come in contact with someone who doesn't know of it, I give them one!! I also put those stickers of Zach on them too!!! This way, they get a little info with a real picture of someone and if they want to learn more, they have the web address and a form to possibly send a donation!! Every little bit counts and the more informed people the BETTER!!!!
Just Thought I'd share that with ya. :)

Love, Brenda

June 2nd, 2004, 05:26 PM
Trisha, I'm glad you have contacted the Faucher family. I knew that website was a little out dated, but I still wasn't sure how old Breanna was.

I did tell my friend, Michelle, a little about your family. I didn't give her your contact info, but told her if this other family wants to make contact to let me know. When I mentioned that I knew of another MPS I transplant family that lives in Belleville, she said she thought that this other family had heard about you all. Maybe from the newspaper articles, I don't know. I gave her the latest issue of courage and an MPS I booklet to pass on to them, too. I'll let you know what happens.

Carrie and Brenda, that's a great idea about the photo stickers on the MPS information.

June 2nd, 2004, 11:41 PM
Lou's Dad and stepmom moved down to Lehigh Acres Florida and there is a child in that city with MPS! Too bad they don't live next door to them. Lou's stepmom loves to watch kids especially special ones and Lou's Dad could walk around saying "What's that banging???" He's never gotten accustomed to all of the noise William produces. :D