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!!

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!!!

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.

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!!

Northern Virginia Father Writes His Way To Hope

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.

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.

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.

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.

The Strange Tale of Ben Beesley -- Official Book Trailer

Matt has written a book for Waverly & Oliver.  ALL of the proceeds will be donated to the National MPS Society for Sanfilippo research. Please watch this trailer for details about the book and consider sharing it with your friends. Pre-orders for the book will begin on May 8th. Thanks!!

My Little Mystery

Waverly is having a very difficult time. The past 6 weeks have been rough and the past few days have brought many more changes. She is still crying/whining almost constantly. Last week I took her in to see our PMR doctor, hoping she would be able to give us some answers. Waverly's walking is getting worse. She is crouching as she walks and seems to be in pain with each step. The doctor agreed that Waverly looked very uncomfortable, but her range of motion was still as it was 6 months ago and there were no signs of any problems that she could see. She suggested we consult with neurology and genetics (we see both within the next 3 weeks).

To keep things interesting, she has started having more difficulty swallowing. I have been able to give her textured foods - tiny pasta noodles in sauce, soups with veggies, rice & beans. She simply cannot eat those items anymore. This become quite clear when she threw up her dinner, after gagging on some star pasta. I have been back to making simple purees and we started giving her Pediasure to keep her calorie count up.

In addition to the constant crying, she is beginning to look more "vacant". I am finding it more difficult to get good eye contact and I feel like she is often looking through me. Last night after we put her to bed, I heard her thrashing around in her bed. I went in to lay with her and she was so upset. After watching her for a few hours and doing some research late into the night, I think she may be having seizures (very common in children with Sanfilippo). I am going to record some of the behaviors tonight to show our neurologist in a few weeks. I hope after meeting with him and having an EEG done, we may get some answers.

I feel like I am constantly guessing at what it could be, trying to find an answer. Ultimately, I know it is all Sanfilippo related. We can still treat some of the symptoms of the disease and alleviate some of the pain/discomfort she is experiencing.

I was reminded once again last night just how awful this disease it. And beyond the pain I feel in watching it slowing take my children away from me, it is a horribly painful experience for Waverly & Oliver. Watching her last night - eyes wide open staring at me desperate for help, body in constant motion unable to settle, thrashing around her bed her body exhausted - I cried for her. I wish I could take away her pain.

House Guests

We had a wonderful week. Our friends came down for a few days from Boston for a visit. We met a few years ago, brought together by the shared diagnosis of Sanfilippo. We clicked, forming a friendship beyond a common disease. I have learned that simply having a child with Sanfilippo in common with another mom does not a friendship make. There is something special in connecting with another mom on multiple levels, where we can discuss real life in addition to the true understanding of what we face. 

Here are all of the kids at our favorite playground. Getting the kids to look for a photo is nearly impossible, but this was a great attempt.

Wrong End of the Spoon

After Waverly was diagnosed, Matt and I were hyper aware of changes in her. We were constantly looking for regression. We both remember vividly when Waverly started picking up her spoon and putting the handle into her food instead of the bowl of the spoon. We would turn it over in her hands and after a few dunks in her yogurt, it was upside down once again. It was a small change, but it signified so much more to come.

Oliver has started to put the wrong end of the spoon in his food. This small behavior has produced so much emotion for me. I feel like he has crested the developmental hill and is beginning the awful journey downward. All of the gains we worked so hard to master are slowly going to begin to slip away.

I can see it in his eyes. He looks lost and confused at times. His eyes well up with tears and his lips pout out in a huff. He isn't sure why things are changing, but he is well aware that things are different. He has been acting out the past few weeks - very unlike Oliver. He is pushing and throwing himself to the floor in protest. I truly believe he is scared and unable to understand what is happening to him.

Waverly has been crying for weeks. Wandering in circles, pacing the hallways and crying. We have been through this stage before with her and I assure you it does not get easy, only more painful. Watching your beautiful little girl so confused with life around her that she weeps most of the day. We have a difficult time soothing her. She awakes each morning in tears.

I try to stay positive and enjoy these little things each day, but tonight a wave of sadness has knocked me over and I am being washed away. My heart aches and I am unable to save them. Sometimes I simply need to sit here in my sadness and allow it to impact me. To fight for a cure for Sanfilippo. To love Waverly & Oliver better tomorrow. To take each moment I have with them to heart and appreciate these glorious little lives I have been so blessed by.

Oliver's Asthma

Poor Oliver. His allergies have been awful this spring and I am cursing my love of all of those warm winter days. Last week was our spring break, so we spent a lot of time outside taking walks and playing in the yard. I think all of that fresh air was simply too much for him. He woke up Friday at 3am wheezing. After 2 nebulizer treatments and a call to our pediatrician, we ended up taking him to the ER. They were quick to get him into a room and evaluated. He was incredibly wheezy, so they gave him an hour long treatment and oral steroids. He was still tight, so they repeated the process and then sent us home. We have had to give him breathing treatments every 4 hours and continue the steroids. He is doing so much better. Now to find a good local allergist to help us put an allergy/asthma plan together.

The White House Easter Egg Roll

Yesterday we attended the White House Easter Egg Roll. We have tried for years to get tickets via they lottery, with no success. This year we had some friends with connections give us 4 tickets for the 7:30 -9:30 time slot. It was an early wake up, but well worth it. The excitement of simply walking on the grounds of the White House was worth the 4:45 alarm.

Matt and the kids 

 Me and the kids

Family photo

Waverly with the White House chef 

Future President Oliver 

Looking at his notes

Happy Easter!!!

Oliver & Matt picking up an Easter egg

Waverly holding on tight to her pink egg 

I adore this photo of Waverly dancing with her shadow!!

Wavey enjoying the egg hunt in our front yard 

Sweet girl looking serious holding her egg 

Matt opened the eggs to reveal M&Ms - big smiles

A Window to My Fears

Last night I checked in on the kids before heading to bed. Waverly was fast asleep on her back, hands crossed over her chest. Silent. Panic set in. I pulled down the sides of her bed and put my hand over her heart. It was beating - beautiful strong beats. I couldn't help but weep. Overcome by their eventual mortality. Every once in a while the fear creeps in and overwhelms me. It is all I can do to sit in the sadness for a short time, before forcing myself to bask in their life today.

Oliver

In lieu of my own photos, I will share these photos from Oliver's teacher. She sent them to me last week to brighten my spirits. 

Oliver celebrating Saint Patrick's Day 

Oliver loves the "Book Look" area and his Dora books

Posing on the playground 

Taking a break and flashing a smile

The Flu

My body was exhausted after the move and Matt's work trip. Unfortunately, that meant the flu hit me hard. I was sick for a full week. Matt had to work from home, my parents came down and I was quarantined to the bedroom (to try to protect the kids from my germs). Thankfully, I finally returned to the land of the living yesterday and thus far *knock on wood* the kids have been healthy. Sadly, this means I haven't gotten a lot of work done around the house. We did get our new outdoor furniture and Matt & my dad spent Saturday putting it all together. It looks great and we are most definitely going to be spending a lot of time outside. I hope to get the final boxes unpacked and things hung on the walls. Then it will really feel like home.

Message from AHFAH

41 months filled with countless prayers.
1100 friends, family members, colleagues and strangers.
43 states.
10 countries.

$176,000.

Because of your love,
two wonderful parents, an amazing girl, and a remarkable boy now have...

A HOME.

Thank you. Your generous contributions helped the McNeils move into a home that fits the needs of their family. We can't express our gratitude enough for the overwhleming support of so many people. If you'd like to stay updated on their family, please visit Shannon's blog at http://familymctravels.blogspot.com.
God is Good!!!!
Michele and Kamarah

(You can see the official note at www.ahundredforahome.com)