Wednesday, February 19, 2014

Article running today in the newspaper

Eyes on Arlington: Trivia party for stricken teen set for March 2

Posted Monday, Feb. 17, 20140 comments PrintReprints
A Trivia Night that sounds like fun is planned for March 2 to raise money to benefit the Ashley OwenFund. Owen, 13, lives in Arlington and has had a rare brain stem disorder called chiari malformation type 1 since she was 6.
Jerry and Diane Maassen are organizing the Trivia Night to help their granddaughter’s family as it deals with her illness.
“I started the nonprofit Ashley Owen Fund eight months ago to help offset my granddaughter’s medical bills due to this very debilitating brain disorder,” said Jerry Maassen. “This event not only helps a great personal cause but also brings awareness to the national effort to fight chiari malformation.”
The main event of the festive evening involves each table working as a team to answer 10 rounds of trivia questions in various categories. At the end, judges review the answer sheets to determine which table answered the most questions correctly. The winning table gets a cash prize.
Between rounds, attendees will visit and shop at a silent auction where bidding may be stiff on some great products and services donated by local merchants. A 50-50 drawing is also planned.
Maassen said businesses can sponsor a round for $100 and in return have their company name mentioned at the event and distribute literature about their business on a sponsor display table.
According to Owen’s blog, the complications and pain from her condition have kept her out of school since late in 2012, but her hard work in home schooling has kept her on grade level. To learn more, visit her blog at
Trivia Night will be at the Knights of Columbus Hall at 2625 S. Cooper St. from 3 to 7 p.m., with doors opening at 2:15 p.m. Partygoers are welcome to bring their own cooler with snacks and wine. A cash bar will offer beer and soft drinks.
The cost is $160 for a table of eight ($20 per person) with early reservations or $25 per person at the door. Reserve your table by contacting Maassen at 702-217-9351 .

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Friday, February 7, 2014

Staying strong!!!!

I just wanted to pop on here and give a big hello to all of Ashley's Angels. There isn't anything new to report. Ashley is about the same really and she is learning to cope and push through her daily headaches and pain. She has really been focused on her online schooling and her writing and drawing. She is so very talented it just amazes me. I have decided in the next few months after alot of thought, to take Ashley to a second Neurosurgeon. This in itself will be such a very long process once again but with her facing this brain disorder with no known cure, we just need to concur with another Neurosurgeon. Thank you all again for your continued prayers and we hope to see you at the fun trivia party event on March 2.

Join us for a fun filled afternoon fighting Chiari

Friday, November 15, 2013

Update on Ashley

It's been awhile since I posted an update but we have been waiting to hear back from the Neurosurgeon. I talked at great length a couple of weeks ago with the head Neurosurgeon that has been handling Ashley's Chiari Malformation case and he said after conferring with several other pediatric neurosurgeons at a recent Pediatric Neurosurgeons Conference last month, they all agreed that he should wait on deciding to do her brain surgery for the time being as they all think that Ashley's case is so complex that surgery may cause more problems than exist right now. He wants to watch her condition for a few more months, and see what other neurological problems develop. Then they will run all the testing again to see what has developed with the swallowing, breathing, and pain issues that have plagued her life for months now. His thoughts are there is no "cure" for Chiari and until he is confident that he can go in and make her well, we are still once again in a holding pattern and will face all the necessary testing over again.

Ashley has been a real fighter as she continues to deal with the this terrible affliction! She still cannot go to school, and is taking an on line school course to help keep her up to speed on her grade level. It is a very rigorous study program, but she continues to handle the load even with the head & neck pain. She still has to put a thickening gel in everything she drinks and we are waiting to get back into the pulmonologist about her sleep apnea. She has had some "good" days the past month or so, and continues to battle this debilitating brain disorder.

So we ask you to please continue the prayers for Ashley as we continue to deal with the hand that's been dealt to her. If you need any other info please let us know. Thanks for being one of "Ashley's Angels", & again many thanks for all your prayers & contributions! We will be forever in your debt!!!!!

Monday, September 16, 2013

Quick Update

It's been a while since our last update, but we are still waiting to hear from the Neurosurgeon, so there is nothing new to report. We are expecting to hear something within the next few weeks since he is meeting with other Neurosurgeons this month to discuss Ashley's situation. Adjusting to online school has been very rough because it seems the workload is doubled versus going to school, but she is still remaining as positive as she can be. We are so blessed to have all of you in our lives, and I cannot say it enough so THANK YOU for your love, support and generosity. Each one of you are Ashley's Angels!
 We will make another update when we hear from the doctor.

Friday, August 2, 2013

New drawing by Ashley 2013

Photo: New drawing from Ashley 2013

2nd Swallow test

They worked Ashley in today for her swallow study. We were hoping after 6 months of being on the nasty gel thickener in her drinks that it would have retrained her swallowing not to aspirate but unfortunately she still had some aspiration with every sip she took. However, it wasn't as much liquid going down the wrong tube as back in February so that was somewhat better. They want her to stay on the thickener for another 3 months then they will bring her in for another swallow test to see how it is then. Ash was bummed but won't let it get her down. She will go see the GI dr on the 19th and we will still be in contact with the Neurosurgeon through all the testing.