|
|
With
my Daddy!!!
On the salt flats with my friends, Abbee, Tylee and Jayden!
With Abbee!
|
| I'm Back! |
|
| Bed Head! |
|
|
Thursday, September 17, 2009
Two Updates in One Day! Sophia's Ride=Cure for SMA!!!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. Three riders left Long Island Tuesday on their bicycles to ride cross country from NY
to Irvine, California. They are riding to raise money and awareness for stem cell research for SMA children.
This research will also help others afflicted with Spinal Cord Injuries and other diseases, such as ALS and MD.
All of the funds generated will go directly to Dr. Hans S. Keirstead and his team at the UC Irvine Reeve-Irvine
Research Center.Dr. Keirstead and his
team are so close to finding a cure for SMA. This ride is called the “Ride for Sophia’s Cure”.
On Sophia’s site www.Sophiascure.com Sophia’s Dad, Vincent quoted “The Ride for Sophia’s Cure was started
through an act of compassion. Three Long Island friends who read about Sophia without previous ties to our family reached out to help. Ryan
Burkett, Dennis Edison, and Michael Grahlfs have decided to go on this amazing journey from NY to CA to help raise awareness
about Spinal Muscular Atrophy as well as funding for the Cure. These three young men are riding bicycles across the country
and they are contributing towards bringing the end of SMA. These are truly incredible young men one of who will be reporting
to become a Marine right after his Ride for Sophia.” You can follow the ride via Sophia’s sight or by going to www.nomorefootprints.com . Also, if you know anyone or have relatives in any of the towns below,
please contact me. We are simply looking for a place the riders can shower, eat and sleep as they will
be camping most of the way. We want to do as much as we can to support them for their efforts for our children.
PA:Lancaster
MD: Hagerstown
West Virginia: Agusta, Salem, Parkersburg,
OHio: Athens, Oxford, Columbus,
Bloomington, IN
IL:Greenville, Alton,
Jefferson City,
MO
Kanas: Overland Park, Emporia, Wichita,
Pratt, Fowler,
New Mexico:Tucumacari, Belen, Socorro
Arizona: Show Low, Payson, Cave Creek, Anthem,
California: Twenty Nine Palms, Palm Springs, Irvine.
So the big favor is…..I am asking
that each family donates .01 cent to every mile these three ride. This comes out to approximately $28.00.
Donations can be made directly through Sophia’s page or you can send it to our new address and we will send over.
Our new address is Daniel’s Hope Fund, 5 Copper Street, Springfield, VT 05156. Please help us to support this ride with prayers and great thoughts. Please
donate if you can. Please pray that these young men are safe on their journey! Please
contact us if you can help with lodging. Our friend, MJ, who also has SMA designed some great merchandise
for the ride. Please check out her web site at http://www.cafepress.com/b4sma/6847926 I am ordering shirts for our family today!
Thank
you, The Sacripante FamilyJustin, Connie and Daniel
Moving update below!
Our Move!Moving day finally
arrived last Saturday. We feel so very blessed to have our own home. Hopefully now we
can create a fun, stable environment for Daniel. His new hospital bed is coming today. He
seemed very confused with his new room but glad to see some of the toys that had been stored. There are
boxes everywhere. Grannie Annie has been working hard to unpack for us. I have not been
feeling well this week but things seem better today. Justin is busy working but has Friday and Sunday off
this week. Our home sits on a hill and is a pale
yellow color with green shutters. We have three bedrooms and two bathrooms upstairs and there is a full
basement below. The former owners started to finish the basement so we do not have much to do to make it
a great family room.
Daniel
has the best sun in the morning! We can look out over the city and see the trees as they are changing.
Daniel loves his windows!
Daniel’s Triple
E team starts coming next Tuesday. We have been so blessed to have his OT, Miss Ruth, come to see him all
summer. He loves her and we love how they interact with each other. They will all be
so helpful in making this big transition….both as a family and for Daniel as a student/patient. We are looking forward to fall but dread the winter. Hopefully
it will not be as long as last. We love the snow but it is a bit isolating for Daniel and I.
This year the flu season will be horrific. We are requiring anyone that sees Daniel to have all
three flu shots….the regular one and the two H1N2 shots. Justin has arranged to change and shower
before he comes home from the clinic. We are going to be vigilant about exposure. I
know that it sounds a bit much but if Daniel gets the H1N2 flu he may not recover. We cannot take any chances
with that.
Thank you to friends
and family that have sent big prayers and good thoughts to help us get into our home. This was the most
important step we have ever taken. We do not plan to live here forever but really needed this stability
for now. This is a great starter house and we feel that we will have some great memories here.
We love you all and all of the support that you have given. Thank you to our parents, Grandpa Lou,
Grandma Joyce and Grannie Annie for making it possible for Daniel to have a good home. We appreciate all
of your love and support. Big hugs and huge kisses….to
all! Connie
|
|
Daniel did very
well on our trip to the Dominican Republic. It was a long trip there and back but he was a trooper. We did need the oxygen
in flight so we are so greatful to Rich from Bennett Medical Services in Elko for loaning us the oxygen concentrator. A
very big THANKS goes out to Marilyn and her co-workers at Delta Airlines here in Salt Lake City. Marilyn made our trip
so much easier and sent us away with so much love and support. She was also here to meet us as we flew back into Salt Lake City.
Marilyn's mother, Kathleen, made Daniel a special "jungle themed" quilt. Daniel loves it! As you
can see by his pictures with Marilyn, he just loves her!
We met two other families while in the Dominican Republic who were there
for treatment. Pictured here are Mathew and his parents, Neal and Susie. They were so friendly and helpful!
We hope that we see them again soon!
Daniel's treatment session went well. Daddy was allowed to start
his IV, which I am sure made Daniel feel a bit safer. We were allowed to lie with him in the hospital bed and the whole
procedure only took a couple of hours. The clinic staff was wonderful, especially Dr. Rader and his wife Debra.
We could have not asked for a better experience. It is a little early to see improvements or progress but we have noticed
some extra movement in Daniel's legs. We try to get him into the pool as much as possible since he is able
to move a bit easier there. As you can see from the pictures, he loves the going to the pool!
We encourage all to write to us for more information
regarding his treatment. We try to answer emails as fast as possible! *Please check out "Daniel's Pics" page for pictures of his trip*
|
