gradys all stars

Batten Journey-Noah Coughlan

Fri, 22 Apr 2011 14:52:00 +0000

Noah Coughlan a man from California is running across america to help raise awareness for Batten Disease. Noah began his journey on Rare Disease Awareness Day-Monday, February 28, 2011 at the Pacific Ocean in San Diego, CA and he will reach his final destination on Saturday, July 9, 2011 at the Atlantic Ocean near Jacksonville, FL. Noah is wearing his Grady's All Stars shirt with pride while he runs. He dedicated Day 52 to Drew and Trent. To learn more please visit www.battenjourney.com. Also you can see Noah's video from Day 52 at http://www.youtube.com/watch?v=AjHWuealjTs. Pictures of Noah are posted in our photo gallery. GO NOAH!!

February 2011 update

Thu, 17 Feb 2011 21:27:00 +0000

It has been a long time since my last update, December and January were crazy months for us. I would first like to send a huge THANK YOU to Payroll Solutions for providing the entire family with wonderful gifts under our tree this year. Things were so crazy with us and by everyone at Payroll Solutions pitching in to play Santa really made our holiday season.

Some of you are aware of why we were so busy but most of you don’t know. Trent was selected to be the second child to receive Gene Therapy at Cornell. His surgery was January 11, 2011. I thought it was a good date 1-11-11! The procedure was initially planned for November and then December but was cancelled each time due to various reasons beyond anyone’s control. Trent was admitted to the hospital the Sunday before for an MRI and blood work. Tuesday was the big day. The operation took around 8 hours from the time we left him in the OR to the time he was in our arms again. The first night after surgery was a little tense with him waking up and trying to get him to drink and eat a little. The next day he had a post-op MRI and when he woke up from that he was “Back to Normal”. In fact he was doing so well he was discharged from the hospital later that day. It took him one more day to be completely base line Trent. Chris left New York on Friday but Trent and I needed to stay for two more weeks for follow-up appointments. We had many visitors and we made new friends. Trent recently had his one month follow-up and the doctors are impressed with him. At the time of his operation he was the healthiest child who has participated in the Gene Therapy trials at Cornell. Here is where I must thank Drew for giving the opportunity to his brother. Thank You Drew!!!! I am hopeful that this procedure will lead to a cure in the future!!

Drew is doing well but he missed his mom. For the past several months Drew has been having horrible bouts of Dystonia, the flu and colds. He will be doing well for several days then have a few bad days. We are working with new doctors in New York to control the Dystonia and make adjustments to his medications. He still loves his family and school. He lets us know with smiles and giggles.

We have several events coming up and as always the Oggie Open in the summer. There will be only a few events this year for Grady’s All Stars. This year we are going to focus on Pennsylvania Batten Disease Support (PABDS) to raise awareness and help other families in PA. I will post our event here as well.

SWING SET!!!!!!!!!!!!!!

Mon, 16 Aug 2010 16:35:00 +0000

Anyone that knows me knows that I am an only child and really never wanted to for much growing up. My parents, grandparents and aunts all fussed over me and pretty much gave into all my demands:D. I was not spoiled!!!! Ok well maybe just a little. My friend Mel (who is also an only) and I would always talk about how similar our lives were. One night we were talking and I said you know I had everything I wanted but I can look back and say I cannot believe I never had a swing set and I kind of always wanted one. She started laughing and said she felt the same way but always wanted a sand box!!!! This conversation quickly became very amusing to both of our families. Well Mel this one is for us!!!! Thanks to a wonderful outreach project my boys have a swing set and a sand box. The boys just love it!! Trent has mastered the climbing wall already and Drew is much closer to all the action in his swing. The cutest thing was them holding hands swinging but Trent would not do it once he knew we wanted a picture.

Thanks again to everyone who made this possible!

Sharon just sent me the picture of them holding hands!!!!!

Swinging

Mon, 02 Aug 2010 14:44:00 +0000

After sitting in the garage for a month the swing was finally hung and Drew really enjoys it. We are so thankfull to every single person and company that has made donations to the boys!!

Quick Update

Mon, 14 Jun 2010 17:37:00 +0000

We wanted to let everyone know that Drew has been invited to be screened for the Genotype-Phenotype Correlations of Late Infantile Neuronal Ceroid Lipofuscinosis (2).

This is exciting news for us. Drew will travel to New York Presbyterian Hospital - Weill Medical College of Cornell University at the end of June. While there he will undergo a series of test and evaluations to see if he is a good candidate for the study. They are selecting 32 children with LINCL to participate. Half of the children will receive the Gene therapy and half will be the control group.

Trent has not been invited as of yet so please continue to pray that he will also be invited for the screening process.

We will keep everyone updated!

Special Thanks to Bethel Park Students

Fri, 02 Apr 2010 15:53:00 +0000

I want to send out a special thanks to the students of Bethel Park High School. The students raised an amazing amount of money for the Drew and Trent by collecting coins. They raised nearly $3,000 for the kids in one day! Please visit http://www.post-gazette.com/pg/10091/1047058-55.stm for the full story that appeared in our local paper.

Drew will be receiving Botox injections on April 12th in his legs to try and reduce the amount of spasms and also relax his muscles so he can wear his braces and hopefully be ready for the up coming baseball season with the Miracle League. Trent is scheduled for his second EEG and first MRI in May. I can only hope that this terrible disease has not started to show its ugly head. I am praying that we can make it past his third and hopefully fourth birthday without a seizure.

Happy Easter!!!!!

Brothers by chance, friends by choice.

Thu, 04 Mar 2010 15:53:00 +0000

Drew was never really that excited about having a baby brother he would hit Trent over the head for no reason or pull his hair. After a few months Drew decided Trent was here to stay and he should embrace it. Drew was very protective of his little brother and would always say "That my brother" or "That my Tent". Yes he called him Tent. Fast forward to this morning at 4 AM. Drew was very fussy for about an hour which woke Trent up. Trent went directly into the kitchen for a fruit cup, banana and cereal bar (this is why I have to remember to shut the gate on the kitchen) and then he went back to bed. Drew settled down and fell back asleep. Trent woke up again at 6. We were all laying on the LoveSac but morning mom duty called so I went down to do laundry and pack up the car. When I came back to get them dressed for school this is how I found them. Please note that Trent's hand is in Drew's hair.

Update on the boys

Tue, 29 Dec 2009 13:54:00 +0000

Christmas seemed to sneak up on me this year! I have been meaning to post an update on the kids but we have been so busy with holiday parties and events.

Since Drew had his feeding tube placed he has gained 8 pounds which is great! We have obtained better control over his muscle spasms too. He is still eating by mouth but we have started to give him some tube feeds on the days he does not feel like eating by mouth. We had a home equipment evaluation the week before Christmas for a medical bed and some bath equipment. We have been warned that insurance will most likely deny this request so I am hoping that we hear back quickly so we can just purchase the bed and bath equipment. Drew’s skills are still regressing and his sight has deteriorated. He still laughs at Trent and his friends. His smiles and laughs can brighten the world.

Trent is completely obsessed with hockey lately! He carries his stick everywhere he goes and now he carries little hockey figures too. He is a great little brother to Drew always sitting with him and placing toys on Drew’s lap. Trent has been working with a speech therapist and he is talking more. He has not shown any other signs of Batten Disease to this point.

We are still considering going to China but are waiting for the Cornell study to start before we make our final decision. At the moment, the study is in the final stage of regulatory review so hopefully we will hear something soon. If we go to China for treatment it could prevent them from participating in the Cornell study.

Also I wanted to let everyone know that we are so thankful for all the thoughts, prayers and donations we have received.

WOW!!!

Thu, 05 Nov 2009 20:41:00 +0000

All I can say is WOW! The response from the WTAE story has been amazing. I knew Pittsburgh was a great city with caring people but I had no idea that my two boys would have such an impact. My email has been going crazy and the Trust is receiving donations every hour. The emails that stand out the most are the ones that talk about my family giving other people the motivation to accept what they cannot change and enjoy life. There was a very inspirational moment in my journey that I usually don't share but thought I would now.

On February 1, 2008 one day after my birthday I noticed that Drew was doing this strange head bop thing. Within 3 days I realized these were seizures and he was having hundreds of them. We were inpatient in the EEG monitoring unit for 4 days and then on the general floors until we adjusted his medications. At that point I decided that I needed to take some time off of work to concentrate on Drew and getting him back on track. There was one day shortly into my six weeks off that I thought I was losing my mind and it was only 8 AM! Drew would get very cranky with medication changes and this day was going to be a BAD one. So I do what I do best and packed him up for some retail therapy at South Hills Village Mall. We walked around a bit before the stores opened and our first stop was the "Mickey Store" aka The Disney Store. Drew was acting up a bit but was doing better. Out of the corner of my eye I noticed a very well dressed mommy with perfect hair and that is when I realized I had not even brushed my hair and I was still in the same clothes I wore the day before. I quickly thought to myself well if Drew was typical I would care. I was too busy making him better to care. Then the mommy turned and in her stroller was the most beautiful blond haired girl who was hooked up to an oxygen tank. At that very moment I wanted to DIE. Really I did. But the lesson I learned was that things never appear as they are at first glance. I did not speak to that mother or daughter but they touched me. I bought Drew a stuffed Mickey, went home took a shower and vowed never to feel sorry for myself again.

Halloween Wedding

Wed, 04 Nov 2009 16:21:00 +0000

Drew and his girlfriend Chloe made it offical on Saturday, October 31st. They are now happily married!

There will be a story tonight on WTAEs 5 pm news. Check it out but if you miss it I will try to post a link after it airs.