Quick update
Just a middle-of-the-winter update. My grandpa passed away on Tuesday. He was 97 and left us just 2 months after my grandma passed…they were such an inspiration to me growing up and in my adult life. We now have 2 more stars to look at in the sky. His jokes will live on in Emily as she tells her jokes to keep us laughing in our lives.
Noah is doing ok. His PT/OT session yesterday was good. He is stronger on all fours for the PT. W’e'll take that! Noah continues to say “Dad-dy” as he is his favorite person!
We’re getting ready to take the girls to Disney World for Laine’s Make-a-Wish trip….thank you to all involved to get us there! Noah will stay on his regular routine at home with Mamo & Hoppa (My parents) so we can concentrate on spending time with Laine & Emmy J. They have been counting down the days and I hope and pray this brings them a little closer. They have been fighting a little bit more…maybe it’s just the winter blues. Keeping Lainey occupied and interested is always a good thing for everyone – no hitting or biting! We have a dinner scheduled with Cinderella on Tuesday. We’ll try to provide updates, as we can of our trip.
Back to getting things done. Jen
Play Date for Hope – January 30th at Emmett’s
Noah’s Hope – Play Date for Hope spacerBuy Tickets
Downers Grove, Illinois 60515 Get Directions
Time out! Beat the chilly January blues by coming out to the “Play Date for Hope” fundraiser, a fun-filled evening of cocktails, laughter, and sports-centered games…all for a great cause!
All event proceeds will go to the Noah’s Hope Fund to support 5-year-old Noah VanHoutan and 3-year-old Laine VanHoutan as they fight the devastating effects of Batten Disease. At this time, Batten Disease is always fatal, usually between the ages of 8 and 12.
The Play Date for Hope fundraiser will be held on Saturday, January 30, from 6:00 p.m. to 10:00 p.m. at Emmett’s Ale House in Downers Grove, Ill.
The Play Date for Hope will feature an evening of sports-themed games for every skill level. Toss a beanbag! Make a tabletop field goal! Chance your luck with football squares! Win at sports bingo! Games will rotate throughout the evening to give you many opportunities to be crowned the champion and win fantastic prizes!
Register online by January 20 at www.signmeup.com/67794 and pay only $20 per person. Alternatively, register at the door on January 30 and pay $25 per person. Patrons will enjoy delicious complementary appetizers to fuel their competition, and a cash bar will be available. Game tickets may be purchased for $1 per ticket throughout the evening. Don’t miss this incredible opportunity to warm up your winter with an action-filled evening of games and laughter to benefit these two very special children.
The VanHoutan family would like to thank Emmett’s Ale House for donating their banquet room for this wonderful fundraising event.
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Noah Giggling
Last night while I was getting Noah ready for a bath I started tickling him…he giggled like I haven’t heard him giggle in a long time. I had to share this moment! It was so fun to see him laugh so hard. I hope it’s because of us reducing one of his anti-convulsants…he’s on 3.
Laine continues to have sleeping problems so we are trying to work out the best solution. It’s a long day when our sleep is interrupted 6-7 times during the night and she is awake and ready to start going for the day by 4AM…
The Girls Birthday – January 11th
Our little girls are turning 4 on January 11th. It’s hard to believe it was 4 short years ago when they came into our world and they make our world very interesting! Emily is writing and working on reading. Laine works hard to keep up with her and she does a decent job given her disease. They will start ballet/tap again tomorrow for the winter and spring session. Tracy and I find such joy in their dancing. Noah loves their end-of-class performances.
Happy birthday to our little girls!
2010 is a new year!
We are working on 2010 being a new year and to open up some new doors in the world of research and treatments.
Our entire family is amazed at the outpour of help from everyone who hears our story.
There are events being planned this year to help raise funds for potential treatment (NVH Family Trust) and via the DuPage Community Foundation – a donor-advised fund called “Noah’s Hope” .
The first event of the year will occur in our home town at Emmett’s (formerly Founder’s Hill). The details are in the events section. I wanted to let everyone know something interesting that happened last year…my co-worker’s (Haworth) entered in a contest for “what is your favorite charity and why” via People Magazine and supported by the Kevin Bacon Foundation – Six Degrees. People Magazine gave out 35 $1,000 prizes. Three of Haworth’s team members WON and directed the funds to Noah’s Hope. About a week later we received a letter from our School District about The Bacon Brother’s coming to Downers Grove and performing at the Tivoli. Tracy had a great idea to buy 10 tickets and auction them off the night of the Emmett’s event. We are hoping to somehow cross-paths with Kevin Bacon to let him know he’s performing in Noah & Laine’s hometown…and his contest directed funds to Noah’s Hope. So Tracy and I will make a date night and we have some other friends joining us for a concert at the “Tiv” within the first 6 rows (great venue).
Hope everyone new year is off to a great start and we have some great news to share this year…
Happy Halloween
Since our blog isn’t working yet because I haven’t had the time to figure it out I thought I’d touch base.
Noah is doing ok. He has had some intense PT and is pretty strong and just wants to go,go,go. He has lost quite a bit of vocabulary since last year. He tries so hard to talk and every once in a while gets a word out and is so proud of himself.
Laine has been put on anti-convulsants. Her behavior is rather challenging at times. So we can’t tell if it’s a 3 year old or medicine. She does love princesses so much and twirls around singing “Singing in the rain…” She is a hoot and usually answers questions with “sure”. For a while she was doing this nervous habit of chewing her hair, but not lately. She is a wonderful help taking care of her brother.
We have started Noah and Laine on some medicines that could help the neurons from breaking down and one for memory. And of course a wide variety of vitamins and supplements…
Our friends started a care calendar where they will take turns and help us out. Last night THe Weaver’s (Tracy’s Fraternity Bros family) came over and Tracy and I went to dinner. We ended up meeting a family and the daughter heard Tracy’s story and said “Oh yes, I know Noah’s Hope” She’s been following our story. That was uplifting to know that we’re getting the word out to strangers. We have to help make this disesae known cause it rapidly deteriorates the child and then it is usually too late to do anything. It was great to go out with my husband!
October was a very busy month for fundraising…Marshalltown Garage Sale, Karaoke Night and two separate runs for Noah’s Hope and the DuPage Doubles and DG Homecomers Groups getting involved. We do have quite a few events coming up in November. A spa is donating 100% of their proceeds to our cause next Friday. You can book a service or buy raffle tickets (great prizes!) Our neighbor is planning a girls night out – Pampered Chef (I am taking orders online too so let me know if you need fabulous products!) and other “vendors”, then my cousin is also having a Holiday Bazaar at her house just before Thanksgiving. Noah’s old pre-school will have a Hop For Hope Event. All is on our noahshope.com website. I have a hard time keeping up with all that is being planned, but am for ever grateful for everything people are doing.
Thank you for your prayers and concern for our family. It’s a daily struggle, but everytime we see Noah’s smile or Laine’s sweetness it’s like a rainbow has gone over us. And of course Emily keeps us hopping with everything she says and does.
Love – Jen & Tracy
keeping in touch
It’s hectic around here so I am sorry that I didn’t mention that
we are working on getting a blog up on NoahsHope.com – the main
reason why I won’t be updating CarePages so much.
I was at the garage sale this morning – and while I wish we
didn’t have to do this – I’m happy to report it was very busy. I
cannot believe the help we received from old neighbors and old
friends and new ones too. Thank you to everyone who helped and
showed their support.
www.noahshope.com
We are updating our carepage less and focusing more on fundraising. There are such limited funds available to researchers that Batten families have to help out. We have a variety of fundraisers coming up and are listed on our website noahshope.com
SEPTEMBER 12 & 19 – Fundraising Garage sale in Jen’s childhood neighborhood
6618 Fairmount Dr.
Downers Grove, IL
9AM – 4PM
Tonie Harrington, long friend of the Farnaus’ is hosting this garage sale. Many, many people have helped her out. If you can offer an hour so so, please stop by and help spread the word.
October 10th – Kareoke Night at Shannahan’s in Woodridge, IL
Hosted by Jenny Bouquet & Rob Johan
These are friends of Jen from high school.
October 18th
Half-marathon in Des Moines, IA
Jagger Copley & Brett Perry are childhood friends of Tracy’s and are looking for pledges to goto Noah’s Trust as they run a 1/2 marathon
November 1st
NYC Marathon
Jen received an email from a woman in NYC who wants to run for Noah’s Trust (and Laine). She will create t-shirts and run for pledges in New York City.
There are 2 more links on our websites of articles posted in Marshalltown, IA and Downers Grove. We know the Tribune is working on a story and should run by next Tuesday – we think in the West zone only…let’s hope it runs full-run.
If anyone has any suggestions for fundraisers or media contacts, please contact Jen at jennifervanhoutan@yahoo.com
We are so blessed for the many, many prayers that are being offered for our children, Noah & Laine. Please do not forget about Emily – she is affected too…although does not have Batten Disease.
We just hope raising money and driving into the researchers can help our children – especially Lainey….you would never know she has Batten if you met her.
To a peaceful weekend. Jen & Tracy
a long road ahead
We now have confirmation that Lainey also has this terrible, terrible disease. Her MRI showed mild atrophy in her brain. Her EEG on Thursday was normal. But Saturday afternoon, while napping, she had her first (known to us) seizure. Emily actually came out of her room telling daddy Laine was Shaking.
She slept most of the afternoon due to some meds we gave her to make sure the seizure didn’t last long…and of course she’s been awake since around 1 AM this morning…I’m sure she’ll fall asleep in time for Noah & Emily to wake up.
We are just in defense mode and trying to figure out how we’ll manange 2 severely handicapped kids and keep our 3rd one on a normal track. Emily was very sad today, I think she’s now aware of what her twin sister is going thru.
We are still trying to push research along – but they just seem too far out. If anyone knows a way to kick out waste material in brain cells – supplements, accupuncture, etc please let me know.
thank you.
jen
additional prayers needed
We received Lainey’s assay test yesterday. It reported a “0″ TPP level (protein enzyme), which means she has the same disease as Noah. We’re stumped because she has not really shown any of the signs that Noah had at this age. We are doing further testing on her through Mass General and need extra-extra-extra prayers to let her TPP level be within a normal range. This will be a different test than what we just did. We are numb with pain right now and just need help saving our precious babies. Emily’s TPP reported in a normal range. I don’t think we can talk with anyone right now so please just pray for us. Jen & Tracy
Noah's Hope Website
