Meet the McNeil Family

Meet the McNeil Family

Monday, May 21, 2012

Reaching the Researchers

For those interested in science: The editor of the American Society for Biochemists and Molecular Biologists Today caught Matt's interview on NPR and did a follow up story on the science involved. Love that the power of a good story could get researchers more interested in working on MPS conditions! 

Check it out HERE!!

Tuesday, May 15, 2012

Happy MPS Awareness Day!!!

Happy International MPS Awareness Day!!! Please show your support by wearing purple. Tell your friends about MPS. Consider texting "CUREMPS" to 80888 to donate $10.00 to the National MPS Society. And remember to pruchase a copy of Matt's book - available for purchase at www.benbeesleybook.com and a Kindle version is available on Amazon beginning today. All proceeds from the book will be donated to the National MPS Soceity to further Sanfilippo (MPS III) research. Thank you for your support!!!

Monday, May 14, 2012

Thank You

Thanks to all of you who have commented on our blog after hearing our story on "Metro Connection". We greatly appreciate all of your kind words and support. Rebecca did such a wonderful job with the interview. Hearing my sweet Waverly's voice on the radio was thrilling. It brought a huge smile to my face and tears to my eyes. I am incredibly proud of Matt and excited to see research progress for MPS. A cure may not come in time or Waverly & Oliver. However, I long for the day when parents are told there is a cure for this horrible disease.

Friday, May 11, 2012

Northern Virginia Father Writes His Way To Hope

Here is the link to Matt's interview on WAMU's "Metro Connection". If you click on the "play" button, you can listen to Matt talking about his book and Waverly singing "Deep in the Hundred Acre Woods". I am so incredibly proud!!

Tuesday, May 8, 2012

Buy Your Copy!!

Matt's book, "The Strange Tale of Ben Beesley, is now for sale!! 

Matt has been working on this book for years. It is a wonderful middle grade novel that tells Waverly & Oliver's story with Sanfilippo in a kid friendly way. Consider reading it to your children, donate a copy to your library or school, give one as a gift. Also, please share the information with your family and friends. The trailer below is a wonderful way to introduce someone to the book and our family's story. We hope this book will help fund research to find a cure.

Click HERE to be taken to the website to purchase the book. 

All proceeds from the sale will be donated to the MPS Society for Sanfilippo research.

Monday, May 7, 2012

Falling

Sweet Waverly. My pretty little girl keeps falling. She so desperately wants to walk, but her little body keeps failing her. She tends to walk in large circles, always to the right since her left hip is causing her so much trouble. After a few laps, her knees begin to crouch more and eventually they just give out. I am stuck between wanting to encourage her mobility and wanting to keep her safe in her chair.

Her orthopedist's office called this afternoon. They want us to get an MRI done on her hip. Hopefully we can get this scheduled quickly. She is obviously in pain.

Saturday, May 5, 2012

First Tooth


My little boy is growing up. Yesterday morning, I noticed his front bottom tooth was loose - really loose. I was determined to put it out, so I could save it. (I have one of Waverly's and I only have it because the doctor had to pull it before surgery.) I pinned him down, with lots of tickles and giggles. Within a few moments and minimal fussing, I twisted and out it popped. A perfect little baby tooth.

Thankfully the adult tooth has yet to appear, so he may have a nice little gap in his smile for awhile. His grown up tooth can take its time coming in. We do not need to rush.

Health Update

Oliver is doing so well with our new asthma program. We met with an allergist a few weeks ago and she put him on some new medication. Thus far he has been doing really well. He hasn't had any wheezing or shallow breathing. He is also *finally* getting used to the nebulizer.

Waverly is still having a tough time. We met with our neurologist last week and he is concerned she is having absence seizures. He wants her to get another MRI and do a 24 hour EEG. We opted for an outpatient EEG. We will go to the office and then will attach all of the leads to her head. Then they will cover her head with gauze (to protect the leads) and we have to try to keep her from pulling them off for 24 hours. That is going to be a treat! We also had her hip x-rayed and there is definitely a problem with her left hip. She doesn't have full range of motion and the hip looks like it is slipping from the socket. We are scheduled to consult with an orthopedist about what (if anything) we can do for her. It is obviously causing her pain and her walking has deteriorated so much over the past few weeks.

It is also IEP season and unfortunately, we are not having the smoothest transition given our move to another base school (yet same school district). We are exploring all of our options, searching for the program that will best meet Waverly & Oliver's needs.

Tuesday, May 1, 2012

MPS Awareness Day - May 15th


MPS Awareness Day is May 15th!!!

Looking for a way to raise awareness and support Waverly & Oliver? Consider hosting a Purple Lemonade Stand in your neighborhood. Our dear friends came up with the idea and logo. It is such a fun and easy way to raise awareness and get your kids involved at the same time. You serve purple lemonade, purple iced treats, grape lollipops, purple M&Ms, etc.