Happy, Happy Birthday to our Little Dan the Man!!!!!!

Wow…..where has the time gone?  It seems like just yesterday they told us that Daniel had this terrible disease and odds were that we would lose him by the age of 2.  We cried, cursed and threw things!  We were heartbroken.  We felt like we had worked so hard to get to where we were in life.   We could not understand why this was happening to us.

What I have come to understand now in my heart is that Daniel is a blessing.  He is here for us….not the other way around….and even though this life is so very hard with his caretaking, no time together as a couple and times of illness…..I would not trade it for ANYTHING!

Daniel’s smiles continue to brighten our world.  His laughter is intoxicating and his kisses are so sweet!  He has touched so many lives….by just being him.

Please help us celebrate his life as he turns 5 today!  I feel as if this is a huge milestone!  For the first time I think he really understands about birthdays!  He is excited and so engaged as we plan for his party on Saturday.  We are so glad that he will be surrounded by friends and family!  Even the O’Neil boys will be here to party the day away with Daniel.  He is SO very excited about that!

Please keep in your hearts that this is Spinal Muscular Atrophy (SMA) awareness month.  Please continue to pray for our children.  We are confident that there is a cure on the horizon!  Please ask us any questions about this disease and how it can be part of your family without you knowing!  Please pass along information about SMA to your families and friends!

Thank you to all that have continued to send us love and prayers.  Your support has helped us through the tough spots!  Your kindness has let us know that we are not alone! 

I never seem to update enough on this website.  Daniel is doing great!  He continues to have pre-school at home and participates in a pre-school circle time via Skype each week.  He love interacting with the children and they seem to love having him there.  Daniel is still participating each week in Occupation and Physcial Therapy.  His schedule seems pretty full during the week and he is such a trooper.  As most of you know we have an aide now….her name is Cindy.  She really is much more than an aide as she is so helpful with most of his care.  We do not allow her to handle anything pertainig to respiratory, just so we have limited hands on his stuff.  I am certain that she will learn everything in time.  Daniel certainly loves her and is eager to spend time with her. 

Justin’s birthday was yesterday.  According to Justin he would rather not have any fuss and forget that it is even happening…as he feels he is getting old. (ripe old age of 34) He did, however, love the cake from our new bakery here in town….and it even was a healthy, all natural one made mostly with Stevia.  Daniels speech therapist, Miriam, and Cindy helped Daniel to make a really special plaque for Daddy’s office….or for at least when he gets an office.  He is still working without one which is challenging…but that is a story for another time. If you get a chance wish him a happy birthday and please feel free to call him old man or ask to help him with his cane!

We have been planning to build a small deck with a ramp for Daniel for the last couple of years.  Unfortunately, the IRS has zapped us again and we are trying to now raise funds for this project.  Grannie Annie is participating in a sale at her local Eagles club today and tomorrow.  She has lots of stuff to sale and all of the proceeds from her table go to Daniel’s Fund.  My lovely cousin, Vicky, donated a really rare and special hat to be raffled.  It was a hat that was given out at the memorial service for Red Adair when he passed.  Most everyone in Texas or the firefighting world know how special Red Adair was and knows how collectable this item is.  If you are not able to attend the sale but want to purchase a chance to win the hat….either call me at 207-807-5218 or contact Grannie Annie at 281-536-0396.  The drawing will take place at 3pm Central Time tomorrow.

Justin and I would like to personally thank everyone that is helping us to finish this project.  Our parents, Lou, Joyce and Grannie Annie have been so wonderful to us.  We would also like to thank my Uncle Bob and Aunt Jeanette and Jeff and Kristy Walker for all of their support.  We love each and everyone of you.

If you get a chance please check out a few things of interest:  Sophia’s Cure has been so insturmental in raising awareness and funds for research for SMA.  Their website is www.SophiaCure.org.  Robby Robinson from American Idol wrote a song for Sophia and it is on her site.  He is an awesome guy.  Also please check out Kristy’s Baby Creations at www.reborndollsbyKristy.com  .  She hand makes the most amazing dolls that are so life-like….from pictures you provide her!  I am so amazed at her work.

We have a super busy summer so we will try to keep everyone updated!  We are excited to have so much going on!  We hope everyone is doing well out there.  Thank you for always praying for our childfren!  We love the support and love of our family and friends!  By the Way….we are on Facebook under Connie Sacripante.  I update on there everyday!

Much love and kisses to all……Justin, Connie and Dan the Man

It has so been so long since we updated the website.  This year has seemed to fly by as we have been so busy and active with Daniel.  We continue to settle into our new house.  We still want to do some work, build a deck with a ramp and finish the basement, but the IRS decided to give us a hard time about our 2007 medical expenses for Daniel.  Hopefully the work will get done this year.

Daniel continues to thrive despite the norms of SMA.  He has his powerchair and works with his Physical Therapist to learn how to drive it.  He does a much better job than I do.  After a year and a half of fighting we finally received his eye gaze Dynavox.  He will now be able to learn and communicate to us using his eyes.  Daniel is still a bit vocal but this will open up his world to so much and will tell us all that he really knows.  Daniel is in his second year of pre-school and will Skype in to class starting next Wednesday.  He will join his class for Circle Time. Daniel is a big bundle of smiles each and everyday.  He loves to sing, watch videos and be read to.  Daniel waits patiently everyday for his favorite time….when Daddy gets home! Daddy is Daniel’s best friend.  We are so amazed at how he has exceeded the norms of SMA.  We feel so very blessed to have him in our lives!  

We made a trip to the Dominican Republic in May.  We had so much fun.  Daniel loves the pool…in fact I think he feels that if you fly somewhere there better be pool there too.  He is also a “rock star” at the resort we stay at and he loves the attention he gets from everyone that works there. 

Daniel had a great summer.  Grannie Annie came for a month and was able to be here for Daniel’s birthday.  Grandpa Lou and Grandma Joyce were also in attendance as was Aunt Lorriane, Aunt Dawn, Heather and Melody.  Daniel was so excited because he surprised Grandpa Lou with a “party” for his birthday too……we worked and talked about it for weeks!  Daniel loves to surprise and scare people….it makes him giggle!  In August we went to Washington, DC for the National Health Service Corp Conference.  It was fun but a long drive.  Justin had a conference in Burlington in October so we were able to see the O’Neill family for five days straight.  We had so much fun.  We went to the Expo about Lake Champlain and to Mt. Philo.  We also hung out at their house and I was even able to go our shopping with Sue.  It was so much fun!  We love the Burlington area and we love spending time with Gene, Sue and THE BOYS!  We were even able to meet Aunt Chris…so much fun!

We finally have someone here to help with Daniel during the day.  Her name is Cindy and Daniel loves her…..well we all do.  She has been such a great help to me.  It was a huge step for us!

I cannot believe that Thanksgiving has come and gone and Christmas is right around the corner.  We are working on the mailing for Christmas and hope that it gets to everyone by then.  We also have a facebook account now so I update DAILY on there.  It is under my name “Connie Sacripante”. We hope that you will all join us on there so you can see updates in a timely manner.

We hope that everyone is doing well…..and we would love updates on your families.  This has been a hard year as we have lost so many SMA children.  Please continue to keep Daniel and the other children in your prayers, hearts and thoughts.  This disease is curable!  Please help us all get to that cure!

Have a joyous holiday and may Peace fill each person’s heart!

The Sacripante Family…Justin, Connie and Dan the Man!

Hello everyone,

This is Daniel’s Dad, Justin. It has been a while since I’ve wrote. Daniel just had the best visit with Grandma and Grandpa for Thanksgiving. Grandma held Daniel a lot and even gave him a hair cut, and then Elmo visited! Please check out the video links at the bottom of the home page to see Daniel’s unforgettable expression.

Things seem to be falling into place for all of us as we approach this holiday season.  We are becoming more settled in our new home. We have been isolating for a few month’s since the H1N1 season hit. We are all finally immunized and will be letting Daniels therapists back into the home for regular visits; Daniel is very excited about this.

We are very excited about the cutting edge research coming out of California for SMA. We believe Hans S. Keirstead of UC Irvine may possibly hold the key to a possible cure for this devastating disease. We hope that the FDA approves his clinical trial of stem cells on human SMA models soon.

Thank you for reading and hope to speak soon.

Justin.

Dear Family and Friends,

I have a huge request in light of the bad economy.  This request will not only help and support Daniel but the other thousands of children with SMA.