As many of you know, I manage the Myotonic Dystrophy Foundation, a patient advocacy group focused on education, advocacy and research for myotonic dystrophy. I was recently invited to speak at a medical conference in Holland, in a small town called Naarden not far from Amsterdam. Just before I left for my trip I received a call from my brother saying that he had just returned from a romantic trip to Italy with his wife Dawn. I had to laugh because there is a famous poem by Emily Perl Kingsley that talks about the experience of having a child with a disability and in the poem it talks about how your lifelong trip to Italy gets re-routed to Holland. This poem was passed on to me by another mom who has a child with congenital myotonic dystrophy when I was in the hospital with Kayla. I remember the impact this poem had on me around Kayla's birth and still has on me to this day. When people ask me what it's like to have a child with a disability, I usually just send them a copy of this poem. I wanted to share it with you.
"Welcome to Holland” by Emily Perl Kingsley c1987
When you're going to have a baby, it's like planning a fabulous vacation trip to Italy. You buy a bunch of guide books and make your wonderful plans... the Coliseum, the Sistine Chapel, Gondolas. You may learn some handy phrases in Italian. It's all very exciting. After several months of eager anticipation, the day finally arrives. You pack your bags and off you go.
Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland!" "Holland?" you say. "What do you mean, Holland? I signed up for Italy. I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place full of pestilence, famine, and disease. It's just a different place. So, you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around. You begin to notice that Holland has windmills. Holland has tulips. And Holland even has Rembrandts. But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, " Yes, that's where I was supposed to go. That's what I had planned." And the pain of that experience will never, ever, ever, go away. The loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.
I have to say that both my trips to Holland (one virtually and the other one that was real) were both life changing. Even though we've been through so much with Kayla I wouldn't give up my "trip to Holland" for anything in the world. I love my daughter more than anything. My second "real" trip to Holland made me realize how many talented, brilliant minds are focusing on this disease. I met with many passionate researchers who are working hard to try and make a difference. I left the meeting feeling more hopeful than ever that treatments for myotonic dystrophy will be found in the next 5-10 years. Thank you to the medical and scientific community focusing on finding cures or treatments for this disease. We are grateful to you!
On another note, we are having a nice 4th of July weekend and had a fun day yesterday BBQing by our pool with good friends. We had at least 30 people here so I'm a little exhausted from cooking all day but we had a blast. I had a special treat; an old girlfriend of mine stopped by with her new baby and she brought lots of her nieces and nephews along. My friend and former college teammate, Ruthie Bolton, is incredibly talented and is not only a professional basketball player (who played for the Sacramento Monarchs) but is also a two time gold medalist in basketball. Well, besides her athletic skills, she also is a talented singer. In fact, she is one of 20 kids and most of her siblings can sing too. Signing is definitely in the Bolton genes. Well, we were blessed to have Ruthie and her family sing the most beautiful version of "Happy Birthday" to Kayla that I've ever heard. They also sang "Amazing Grace" which was also incredible and of course, made me cry. Moments like that make me realize how important it is to stay connected to friends and continue to live life as we did before the diagnosis of myotonic dystrophy in our family. THANKS RUTHIE for making Kayla's birthday so special!
Showing posts with label "Childhood disease". Show all posts
Showing posts with label "Childhood disease". Show all posts
Sunday, July 5, 2009
Friday, April 10, 2009
Join us for a networking mixer "Cure For Kayla" in Sacramento, CA to raise awareness and funds for myotonic dystrophy
Sacramento Community Connection(SCC), http://www.sac-connect.com/, a local networking group in Sacramento, CA presents "Cure For Kayla", a fundraising mixer to support the Myotonic Dystrophy Foundation, a patient advocacy group dedicated to education, advocacy and research for myotonic dystrophy, a common form of muscular dystrophy that can affect infants, children and adults. This event is in honor of Rocklin, CA’s 3 1/2 year old Kayla Vittek, who lives with congenital myotonic dystrophy, this devastating neuromuscular disease that was present at Kayla's birth. Please come and support this great cause and help so many families living with myotonic dystrophy.
Kayla’s long time nurse and family friend, David Alvis, told Kayla’s story to a friend, Kelly Grady, who runs a gift basket business called Basket Works & Beyond - http://www.basketworksandbeyond.com/. Kelly shared Kayla’s story at one of the SCC networking meetings and it struck a chord for everyone in the room. The group decided to host their annual fundraiser for 2009 in honor of Kayla. Our family is blessed to have our lives touched by so many wonderful, caring and supportive people in the Sacramento region. Thank you SCC!
To learn more about this event go to: www.sac-connect.com/April_Mixer.html or to purchase tickets, go to: http://www.cureforkayla.eventsbot.com/. The Myotonic Dystrophy Foundation needs your support!
The following local Sacramento businesses are offering special discounts on their services up until this event and will donate proceeds to the Myotonic Dystrophy Foundation. Please support these local businesses as they are a shining example of how we can all work together to make this a better world.
ACN
About: ACN provides cellular phones, ADT Home Security, Dish and Direct TV, local and long distance phone service and our new video phone. To learn more about the new video phone go to: About the Technology - http://sgt.acnrep.com/v.asp?I=11154B6D5B0D, ACN on The Celebrity Apprentice - http://sgt.acnrep.com/v.asp?I=1111456C5D0C, About the Company - http://www.6cessline.com/web/home.html.
Contact: Thomas Seifert at 916-529-4635 or by email: thomasseifert@sbcglobal.net
Offer: They are working on a charity Motorcycle ride in honor of Kayla. All proceeds will go to the Myotonic Dystrophy Foundation in honor of Kayla.
Aim High Specialties
About: Aim High Specialties is a Promotional Products Company that gives you the power and the resources to promote your business from Advertising to Vinyl Lettering
Contact: John Book at 916-213-3612 or visit his website: http://www.aimhighspecialties.com/ john@aimhighspecialties.com
Offer: Every order Till April 30th 2009, they will donate 10% of their earnings to the Myotonic Dystrophy Foundation in honor of Kayla
Attention to Detail
About: Attention to Detail is a mobile detailing unit for your vehicles.
Contact: Jon Veloria at 916-289-5946 or see his website at: www.myspace.com/attentiontodetail2
Offer: A generous portion of all sales up until the event will be donated to the Myotonic Dystrophy Foundation in honor of Kayla.
Alpha Package: HIGHSPEED WASH AND VAC $15.00-$30.00
Bravo Package: EXTERIOR HAND WASH & WAX $45.00-$65.00
Charlie Package: INTERIOR WITH SHAMPOO CARPETS $ SEATS $45.00-$65.00
Delta Package: MINI DETAIL $85.00-$100.00
Echo Package: $185.00+ COMPLETE G.I. PACKAGE ENGINE TO THE BACK....NOTHING GETS MISSED...WITH 3 STEP (CLAY,POLISH, WAX)
PAINT SEALANT $69.99
CARPETS & SEATS ONLY $35.99
RAIN X WINDOWS $14.99 FRONT $2.50 ADDITIONAL
WATERSPOT REMOVAL, TREE SAP, TAR, OXIDATION $35.99+
SPRAY-ON BEDLINERS START @ $350.00 BED OVER THE RAIL $75.00
GRAPHICS $20.00 ART FEE + COST OF VINYL AND SIZE
WINDOW TINTING STARTS @ $65.00+
Heartfelt Hands Massage
About: Heartfelt Hands Massage Therapy will help you escape from the hectic pace of life and take time for yourself. Whether you may be seeking relief from a medical condition, searching for a means to help deal with the daily stresses of life or simply wanting to maintain good health, her intention is to help you reach your goal.
Contact: Debi Gaul at 916-484-7565 or visit her website: http://www.heartfelthands.com/
Offer: Debi will be donating one hour massage gift certificate for the event and will be providing massage at the event and all gratuities will be donated to the Myotonic Dystrophy Foundation. She will also be donating a week of gratuities in honor of Kayla.
Liberty Mutual
About: Liberty Mutual provides Auto, Home, Renters, Condo, Motorcycle, Atv, Boat, Flood, Earthquake, Rental, Misc vehicle insurance, etc.
Contact: Melissa Messer at (916) 294-9518 ext. 59004 toll free 800-505-3045 ext. 59004 or by email: melissa.messer@libertymutual.com
Offer: For every quote that is completed, Liberty Mutual will donate $10 to the Myotonic Dystrophy Foundation to try and help fund a cure for Kayla! Limit one $10 donation per household. No purchase required. They will donate up to $3,000. The Liberty fundraiser runs until the April 30th SCC Mixer Event.
PAPA Contruction & Remodel Service
About: PAPA Construction & Remodel Service, Inc. is a full service remodeling company. We are licensed, insured, bonded above and beyond those required by the State of California. We work closely with the California State Licensing Board and United Contractors Association to help stop fraud and abuse with in our industry. Our work is of the highest quality.
Contact: J.A. & Emily Neeland at 916-721-4545 or 916-524-3280 or visit their website: http://www.papacontruction.com/
Offer: They will be donating 5% on Labor Charges collected to the Myotonic Dystrophy Foundation in honor of Kayla for work performed in April and May. We are also extending our April/May Special Discount of 10% on labor charges for COSTCO customers for being Business of the Month for remodel/repairs/renovations booked in the months of April and May to anyone who mentions the Cure for Kayla/ SCC Mixer.
SendOutCards
About: SendOutCards assists people in business to stay in touch with clients and customers by sending heart felt greeting cards and postcards. In return business owners and clients build a longer, lasting relationship which in turn increases revenue by 15-20%. www.sendoutcards.com/shay click here to send a FREE card! They also assist people looking for a way to earn some additional income through our affiliate program (another reason why people in business like SendOutCards-they get paid for referring business!).
Contact: Shay Wheat at 916-339-2816 or by email: shay@millionairepartnerships.com.
Offer: They will donate 2 $25 accounts with 10 cards and 10 stamps on each account for the event. They are also looking at setting up the foundation as one of the charities to donate to via SendOutCards.
Wagner Plumbing
About: Wagner Plumbing has been providing excellent service to residential & commercial customers throughout the Sacramento area.
Contact: Jeff Wagner, Sr. at 916-481-6593 or visit his website at: http://www.wagnerplumbers.com/
Offer: An auction at the event - the winning bidder will receive installation of a brand new 1.28 gallon low flow toilet. This installation will include the toilet, wax seal and additional miscellaneous parts. The winning bidder will also get $20 dollars off the hourly rate for any additional plumbing needs that they have. They are also sponsoring the cost of the t-shirts for the SCC party. Anyone who donates $50 or more gets a “Cure For Kayla” t-shirt.
Kayla’s long time nurse and family friend, David Alvis, told Kayla’s story to a friend, Kelly Grady, who runs a gift basket business called Basket Works & Beyond - http://www.basketworksandbeyond.com/. Kelly shared Kayla’s story at one of the SCC networking meetings and it struck a chord for everyone in the room. The group decided to host their annual fundraiser for 2009 in honor of Kayla. Our family is blessed to have our lives touched by so many wonderful, caring and supportive people in the Sacramento region. Thank you SCC!
To learn more about this event go to: www.sac-connect.com/April_Mixer.html or to purchase tickets, go to: http://www.cureforkayla.eventsbot.com/. The Myotonic Dystrophy Foundation needs your support!
The following local Sacramento businesses are offering special discounts on their services up until this event and will donate proceeds to the Myotonic Dystrophy Foundation. Please support these local businesses as they are a shining example of how we can all work together to make this a better world.
ACN
About: ACN provides cellular phones, ADT Home Security, Dish and Direct TV, local and long distance phone service and our new video phone. To learn more about the new video phone go to: About the Technology - http://sgt.acnrep.com/v.asp?I=11154B6D5B0D, ACN on The Celebrity Apprentice - http://sgt.acnrep.com/v.asp?I=1111456C5D0C, About the Company - http://www.6cessline.com/web/home.html.
Contact: Thomas Seifert at 916-529-4635 or by email: thomasseifert@sbcglobal.net
Offer: They are working on a charity Motorcycle ride in honor of Kayla. All proceeds will go to the Myotonic Dystrophy Foundation in honor of Kayla.
Aim High Specialties
About: Aim High Specialties is a Promotional Products Company that gives you the power and the resources to promote your business from Advertising to Vinyl Lettering
Contact: John Book at 916-213-3612 or visit his website: http://www.aimhighspecialties.com/ john@aimhighspecialties.com
Offer: Every order Till April 30th 2009, they will donate 10% of their earnings to the Myotonic Dystrophy Foundation in honor of Kayla
Attention to Detail
About: Attention to Detail is a mobile detailing unit for your vehicles.
Contact: Jon Veloria at 916-289-5946 or see his website at: www.myspace.com/attentiontodetail2
Offer: A generous portion of all sales up until the event will be donated to the Myotonic Dystrophy Foundation in honor of Kayla.
Alpha Package: HIGHSPEED WASH AND VAC $15.00-$30.00
Bravo Package: EXTERIOR HAND WASH & WAX $45.00-$65.00
Charlie Package: INTERIOR WITH SHAMPOO CARPETS $ SEATS $45.00-$65.00
Delta Package: MINI DETAIL $85.00-$100.00
Echo Package: $185.00+ COMPLETE G.I. PACKAGE ENGINE TO THE BACK....NOTHING GETS MISSED...WITH 3 STEP (CLAY,POLISH, WAX)
PAINT SEALANT $69.99
CARPETS & SEATS ONLY $35.99
RAIN X WINDOWS $14.99 FRONT $2.50 ADDITIONAL
WATERSPOT REMOVAL, TREE SAP, TAR, OXIDATION $35.99+
SPRAY-ON BEDLINERS START @ $350.00 BED OVER THE RAIL $75.00
GRAPHICS $20.00 ART FEE + COST OF VINYL AND SIZE
WINDOW TINTING STARTS @ $65.00+
Heartfelt Hands Massage
About: Heartfelt Hands Massage Therapy will help you escape from the hectic pace of life and take time for yourself. Whether you may be seeking relief from a medical condition, searching for a means to help deal with the daily stresses of life or simply wanting to maintain good health, her intention is to help you reach your goal.
Contact: Debi Gaul at 916-484-7565 or visit her website: http://www.heartfelthands.com/
Offer: Debi will be donating one hour massage gift certificate for the event and will be providing massage at the event and all gratuities will be donated to the Myotonic Dystrophy Foundation. She will also be donating a week of gratuities in honor of Kayla.
Liberty Mutual
About: Liberty Mutual provides Auto, Home, Renters, Condo, Motorcycle, Atv, Boat, Flood, Earthquake, Rental, Misc vehicle insurance, etc.
Contact: Melissa Messer at (916) 294-9518 ext. 59004 toll free 800-505-3045 ext. 59004 or by email: melissa.messer@libertymutual.com
Offer: For every quote that is completed, Liberty Mutual will donate $10 to the Myotonic Dystrophy Foundation to try and help fund a cure for Kayla! Limit one $10 donation per household. No purchase required. They will donate up to $3,000. The Liberty fundraiser runs until the April 30th SCC Mixer Event.
PAPA Contruction & Remodel Service
About: PAPA Construction & Remodel Service, Inc. is a full service remodeling company. We are licensed, insured, bonded above and beyond those required by the State of California. We work closely with the California State Licensing Board and United Contractors Association to help stop fraud and abuse with in our industry. Our work is of the highest quality.
Contact: J.A. & Emily Neeland at 916-721-4545 or 916-524-3280 or visit their website: http://www.papacontruction.com/
Offer: They will be donating 5% on Labor Charges collected to the Myotonic Dystrophy Foundation in honor of Kayla for work performed in April and May. We are also extending our April/May Special Discount of 10% on labor charges for COSTCO customers for being Business of the Month for remodel/repairs/renovations booked in the months of April and May to anyone who mentions the Cure for Kayla/ SCC Mixer.
SendOutCards
About: SendOutCards assists people in business to stay in touch with clients and customers by sending heart felt greeting cards and postcards. In return business owners and clients build a longer, lasting relationship which in turn increases revenue by 15-20%. www.sendoutcards.com/shay click here to send a FREE card! They also assist people looking for a way to earn some additional income through our affiliate program (another reason why people in business like SendOutCards-they get paid for referring business!).
Contact: Shay Wheat at 916-339-2816 or by email: shay@millionairepartnerships.com.
Offer: They will donate 2 $25 accounts with 10 cards and 10 stamps on each account for the event. They are also looking at setting up the foundation as one of the charities to donate to via SendOutCards.
Wagner Plumbing
About: Wagner Plumbing has been providing excellent service to residential & commercial customers throughout the Sacramento area.
Contact: Jeff Wagner, Sr. at 916-481-6593 or visit his website at: http://www.wagnerplumbers.com/
Offer: An auction at the event - the winning bidder will receive installation of a brand new 1.28 gallon low flow toilet. This installation will include the toilet, wax seal and additional miscellaneous parts. The winning bidder will also get $20 dollars off the hourly rate for any additional plumbing needs that they have. They are also sponsoring the cost of the t-shirts for the SCC party. Anyone who donates $50 or more gets a “Cure For Kayla” t-shirt.
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