A Letter from The Browne Family:

To all our family and friends-

This year my mom decided to have me write our annual letter, so I am giving it my best shot! Here is the latest with us:

My Little Sister, Alexandria (Alex) 12.12.00

Super Cool Little Sister, Awesome Daughter (At least that’s what I hear my mom say), She Curls Up Her Cute Little Button Nose Every Time She Smiles And When She Smiles Her Entire Little Face Lights Up! It’s Pretty Cool! She Has Very Thick Beautiful Blonde Hair, Happy, Loves Life, Gorgeous Green Eyes!

As for myself, I am The Big Brother, Russell 5.18.99

Super Cool Big Brother, Awesome Son (I always hear my mom say that), I am Very Mellow and I Like to Just Chill Out And Appreciate The Things Going On Around Me. My Mom Is Always Telling Me What A Beautiful Boy I Am And How I Have These Big Blue Eyes With Beautiful Long Eye Lashes, so I Guess That Is Pretty Cool!

As for my sis and I we attend Baden Powell Elementary School- We really like it there! It’s a great place where we get lots of special attention. My mom says that they really help us with all our “special needs” things that we require. I don’t know about all that, but I know that we have a really cool teacher and that we have super cool teacher assistants that really help us out with things. Alex and I are in the same class, but we have different TAs that work with us.

We like to hang out on our deck at our house and soak up the sun. We live in Seal Beach and we love going down to the beach and hanging out. That’s where we spent our summer, just hanging out on the beach. We had many friends that came down to visit us this summer, so we had lots of beach days. We like to take walks down to Main St. Seal and go to get something good to eat. My mom likes to go into the shops and look around, I don’t know about shopping, but I know that I love going down there with my mom and my sister riding in the stroller, my wheelchair or we cruise our super cool 3 -wheel trike-bike that the awesome guys down at Main Street Cyclery built for us. It’s a blast!

Some other things this year for my sis and I, Let’s see: Challenger Baseball 2009- (with some cool friends that helped us out), We Love Going To The Park and Of Course The Beach, Hanging Out With Friends And Family, Chill’n at Nana & Papa’s House- (they spoil us!) Summer School Program 2009- Good Times! Fans of Blues Clues And Pretty Much Any Show On The Sprout channel And Of Course Basketball and Baseball Games Are Always On At Our House- The Sports Channel Rocks! After School Program Care With Our Buddy PJ Lee- He Takes Good Care Of Us And Really Helps Us Out, We Think That He Is The Bomb! Physical And Occupational Therapy, We Love To Go On Car Rides With Mom And Blast The Music In The Car. We Love To Visit With Friends, Going On Walks, People Watching, We Love Picture Books And Music, My Sister Loves Jumping On The Trampoline On Our Deck-She Absolutely Loves It! She Also, Goes A Mile A Minute And My Mom Is Always Chasing

After Her- It’s Fun For Me To Watch- It’s Entertaining! Doctor Appointments Are Part Of Our Deal And We Have An Absolute Great Team Of The Best Doctors That Work With Us! I Had To Get A Feeding Tube Put In To Help Me Eat Better, That Is Working Out Good, Now. My Sister Can Still Feed Herself, but She Sure Is Messy When She Eats!

Both my sister and I struggle With MPS III-Type A (Sanfilippo Disorder)- It has devastating affects on us both physically and developmentally. We have both lost all of our words and I have lost my mobility, my muscle and bone tissue is really starting to be affected, but we do okay. My mom has us on a routine schedule and somehow we make it work! She knows what we need and we all do our best. I have the developmental level of about a 6 mo.- 1 year old and my sister is at about a 1 year to 18mo. level. We are in these bigger kid bodies, but we don’t have the bigger kid abilities, so it gets a bit frustrating, especially for my mom, but we “Keep Calm And Carry On,” at least that’s what my mom always says to do.

We are 1st class members of “Team Browne” and are awaiting a treatment/cure for MPS III-A. Thank you for all of the support you give to my family and I. My mom says that we are blessed with the most special family and friends that are in our lives and that the people in our lives truly ROCK! Well, I am not sure about what all that means, but I think it’s good stuff, so I think she must be right! Thank you for all that you do for us!

• • •

Thank you all for your continued love and support in dealing with this tough MPS Disorder that we struggle with daily. Each and everyone one of you have touched our lives and blessed us in so many different ways. I know that God is continually watching out for us and I believe each and everyday for the miracle that my children will be well. Thank You!

I also want to thank you all so much for the incredible support both emotionally and financially that you all have given us in the past. We are participating, once again, in the Annual MPS Walk/Run 2009, On Sat. Oct. 17th. If you can come out and be apart of this wonderful event, we would love for you to join “Team Browne” for either the one mile “Fun” walk or the 5k (3.2 miles=for those of you that are runners). If you are unable to attend, but would like to donate we would be grateful. You can register and/or donate on line at www.mpsrun.com or you can send a check/money to me and I will take it with me the day of the run. Please make checks payable to the MPS Society (In the memo part of the check please specify that you are donating on behalf of “Team Browne”) Thank you!!!

I want to thank you all for the amazing support in coming to the event that took place in Jan., earlier this year for the screening of the “Courage” film produced by Jonathan Formica. That was such a special event and we appreciated all of you coming out for that. If you are interested in getting a copy of the film please go to www.couragemovie.com and you can find out how to do so.

Love,

The Browne Family

Los Angeles MPS Walk/Run

Saturday, October 17, 2009
Check in begins at 7:00 AM
Race and Walk begin at 8:30 AM

Oak Mesa Park
5400 Wheeler Ave
La Verne, CA 91750

Register online at www.mpsrun.com. Be sure to mention you are with Team Browne

<< return to couragemovie.com • continue to run regisration >>
*Run regisration is not opperated by Jonathan Formica

Saturday, October 17, 2009
Check in begins at 7:00 AM
Race and Walk begin at 8:30 AM

Oak Mesa Park
5400 Wheeler Ave
La Verne, CA 91750

Visit mpsrun.com for more info or register online here.
Fees increase October 11, 2009

Courage DVDs coming December 2009

We have been working diligently to produce DVD copies of “Courage.” Due to unforeseen technical difficulties and license issues, the publication has been delayed. We are sorry for this delay and hope to have an order process in place by December 2009. We will continue to update you through our website, Facebook page, and e-mail list.