Jacobs Mommom's Comments

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At 8:06am on February 12, 2010, Ofelia Marin said…
Hi Donna,

No, I did not talk to Debra lately. I just asked her if Prosensa has FDA approval to start trials in US (either 51 or 44) and she said no, they do not have approval yet. I really hope they obtain it soon! How much longer can they hold these trials?

Ofelia
At 10:59am on January 20, 2010, terri ellsworth said…
Hi,

Haven't been active in a while on this chat site. So forgive me to those who have messaged me. To refresh, my Billy, who turned 9 January 6, has Duchenne. He is doing well and is a pistol. I'm in a west suburb of Pittsburgh. Feel free to anyone who wants to chat. My email is terri.designscapes@comcast.net which is probably the most efficient way of contacting me. Take care everyone and don't give up the fight and the hope. Help is coming. Can you tell I'm an optimist! Have fun with your boys and laugh and tickle alot:)
At 10:26am on December 9, 2009, Bill Watts said…
Billy the oldest who is 41, has a straight back which was helpful for him. He had math dyslexia but other than that he is normal. He went in a wheelchair at 13. Chris is 36 and he is EMR. He also went into a wheelchair at 13. They grew up in Warminster and attended centennial schools. Bill was mainstreamed but chris was in special ed. My wife and I were divorced in 1981 and the boys continued to live with me in warminster. We had attendants to help take care of them once they were 18. All MD kids are eligible for state aid after 18. Billy had mild pneumonia in 1987. My parents who lived with me passed away in 1998,99 and because I had no-one home during the day the boys decided they wanted to become residents of Good Shepherd home in allentown. They moved there just before christmas 1999. This was probably the best decision we ever made because they receive excellent care there. I visit them 3 - 4 times a week. Billy had pneumonia again in 2003 and spent 2 months in the hospital (Lehigh vally Hosp). Chris had a seizure (That lasted for 3 hours) in 2007. We thought along with the doctors that he would never recover but to our surprise he came out of his coma ABOUT 3 WEEKS LATER. HE IS FINE NOW. Billy is starting to have heart problems and is being scheduled for an implanted heart defibrillator in about 3 weeks. There are 4 other MD kids living at Good Shepherd but most are Cerebral Palsy cases. If you have more questions I’ll be glad to try to answer them. Bill Watts bwatts@bwatts.org
At 1:31am on November 3, 2009, Pat Nivens said…
Hi Mommom, Thanks for sending me the email. This is all new to me so I hope I'm writing this where I'm suppose to. I see you live in PA. I use to live in Pine Grove PA, back in the 70s. I'm not sure if you're near there. I am going to try to send you an e-mail. Your little man is so handsome. As soon as I figure this all out I will post a current picture of Brady. Will write more later. Grammy Pat
At 11:57am on September 24, 2009, lisa palm said…
Hi Donna, I heard about this, but already have something for my older daughter tht day. I will post this on my fb again, I know people who were going to buy golf balls even though they could not go!! Keep in touch, thanks, Lisa
At 11:03am on September 15, 2009, Misty Baumgartner said…
Thank you for welcoming me to the community.
At 4:44pm on July 15, 2009, Evelyn said…
I am hoping so, but I need to iron out my son's doctor appointments. we are making a trip in Ohio to see Dr. Wong and I want to get everything confirmed before I commit to the Oct 3rd date. In addition and I am pregnant and have been very sick. I should be able to get things under control int he next week or two.
Thanks for contacting me
Evelyn
At 3:00pm on June 15, 2009, Jacobs Mommom said…
Hi Jessica:
Thanks I will add it to the group email list. I know all about being busy:)
At 10:57pm on June 14, 2009, Jessica Florkowski said…
Donna, sorry I have been very busy. Here is my email: jflor@ptd.net
At 10:00am on May 15, 2009, Regina said…
Sure-- my email is sjrrmd@verizon.net
At 8:39pm on May 14, 2009, Regina said…
Hi-- I'm sorry to be out of the loop. I know we have a fundraiser happening here on Halloween (being organized by the Johnsons), but if the new date doesn't conflict I should be able to help. My in-laws aren't too far from quakertown. They live in Warwick.
At 8:00pm on May 12, 2009, Jessica Florkowski said…
Yes, I am interested. E-mail me the details please.
At 9:21pm on May 11, 2009, Perlita & Gordy Hains said…
Yes, I'm happy to help. I thought I was already partmof the PA Families group. I was following the Q-town BLOG but yhen got a little confused. I will e-mail you to get the details - THX for organizing!!!
At 3:27pm on May 5, 2009, Manal K. Elissawy said…
Hi Donna,

My parents in low live in Lackawanna County where we stay at their place every summer. I’m so sorry that we will not be able to attend the fundraiser in October. I’d love to help. I’ve been following your email for the group and am feeling bad that we live far away. As I mentioned before we live overseas. My husband teaches at the American University of Sharjah, UAE, and I don’t teach any more.

We (Adam, Zane and myself) are going to be in US on June 10th. We’re planning to be at Hershey Park on 28 of June (hope the event still on.) We are looking forward to meet you and the other group members there.
At 3:26pm on May 5, 2009, Jacobs Mommom said…
No matter what we will make sure to get together with you:)
At 3:24pm on May 5, 2009, Manal K. Elissawy said…
Hi Donna,

My parents in low live in Lackawanna County where we stay at their place every summer. I’m so sorry that we will not be able to attend the fundraiser in October. I’d love to help. I’ve been following your email to the group and am feeling bad that we live far away. As I mentioned before we live overseas. My husband teaches at the American University of Sharjah, UAE, and I don’t teach any more.

We (Adam, Zane and myself) are going to be in US on June 10th. We’re planning to be at Hershey Park on 28 of June (hope the event still on.) We are looking forward to meet you and the other group members there.
At 10:16am on May 4, 2009, Jacobs Mommom said…
Thanks, I will look into it. I'm sure every little thing helps:)
At 9:26pm on May 3, 2009, Joshua's mom said…
Here is one of many sites; http://www.poptabsforwheelchairs.ca/ . We are in Canada, so I'm not sure what group there is in the U.S.. They say it takes about 1/2 a gymnasium for a wheelchair, but we have towns collecting and as for the cans, we recycle and put into a bank account for him in case he needs other things later on ie: upgrades to his chair, laptop, or whatever. Everyone is collecting the tabs already so they just bring the cans as well!

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