An overview of our visit

Well, our visit with NAITalie has come to an end and she is well on her way to her next family to visit. Our time with NAITalie was pretty darn special and it was filled with love of love and snuggles. Colton and Payten-Raye spent everyday with her and made sure that she was included in their day to day activities including Highland Dance, horse back riding, riding ATV's, racing Quarter Midgets, playing with friends and two interviews to help raise awareness to this awful disease that has brought so many of us together, the one good thing that came from NAIT. I hope that every family enjoys NAITalie as much as we did and I truly hope that her venture makes a huge impact on our goal of raising awareness to N.A.I.T. Until we meet again NAITalie. Thanks for your visit!

Love, The Marfleets

Maple Ridge Times article

Well, today is the day that the NAIT article came out in the Maple Ridge Times. I am very pleased with the article and am hoping that a lot of people read it and got something out of it. I know that I did recieve some messages from some of my non NAIT Moms and Dads, and the people were very pleased and impressed. Here is the link in case any of you would like to read it. This is just the beginning for me and I will continue to try to raise awarenss for this awful disease.

http://www.mrtimes.com/health/Teddy+teaches+about+blood+disorder/5304448/story.html

A personal friend of mine as well as a very talented photographer and blogger (among other things) came by to see what the fuss was all about the NAITalie Bear. Andrea and I have known each other for a number of years so she is well aware of the affects that NAIT can have on a baby, a pregnancy and a family. Andrea is the author of a local blog called mymapleridge.ca and she was willing and interested in doing an article on the affects of NAIT and raising awareness with the travelling NAITalie bear. Pen and paper in hand and her camera slung over her shoulder, Andrea started asking some questions to Colton and Payten-Raye as well as to Wil and myself. As it turns out, the kids don't remember being born but they both have little scars from the IV on their hands. They both think that it is pretty cool to have the NAITalie bear here to visit but they are happy that NAITalie will be moving on to the next family in hopes that we can raise awareness for this awful disease. We will be sad to see her go but it is almost time to send her on her way to the next NAIT family so that she can bring a bit of every NAIT family together.

You can find Andrea's blog at: http://mymapleridge.ca/blog

B.C. Childrens Hospital

On Sunday, Aug 21, 2011 we all climbed in the car and went for a ride to B.C. Children's Hospital to visit a little friend of ours who was there. What a great place to take NAITalie to show her the hospital that saved both Colton and Payten-Raye's life. There was lots of excitement on the Pediatric floor when NAITalie showed up to visit. We were hoping that some of the Dr's that had a hand in dealing with NAIT first hand might have been there but unfortunately being Sunday, they were not available. We had lots of fun playing outside on the deck of the Pediatric unit, swinging on the swing and enjoying the sun. We visited for a while with our good friend Grace who has spent a good portion of her life there. She has a type of Nephrotic Syndrome and had to have a kidney transplant last year. Her Daddy gave her one of his "super kidneys". She is well on the road to recovery and is enjoying doing all the things that kids love to do :).

NAITalie arrives in Maple Ridge, British Columbia, Canada

The much awaited and anticipated arrival of NAITalie has finally come to an end. On August 16, the kids received that little white slip that told them that there was a package awaiting their pick up at the local Post office. They were so excited that they came to see me at work so that I could watch them open the box that contained their little treasure that gets to visit with them for a week or so. I will admit that there have been disagreements over who's turn it is to sleep with the bear, or snuggle the bear, or show their friend the bear but NAITalie has received nothing but love since her arrival.

On August 19, Colton and Payten-Raye were interviewed by Sylver McLaren from the Maple Ridge Times about the visit from NAITalie and the condition that they were born with. I feel that the interview went well and Sylver seemed genuinely interested in learning more about Neonatal Alloimmune Thrombocytopenia. As soon as the article comes out, I will post a link so that everyone can read it. I hope that this is a step in the right direction for raising NAIT awareness.

NAITalie Visits Shriner's Hospital for Children in Montreal, Quebec, in Canada

NAITalie started her journey by visiting the Saint John Airport on the East side of Canada where she took her first plane trip to Montreal, Quebec in Canada. NAITalie accompanied Travis and Nathan during Travis' stay at the Shriner's Hospital for Children in Montreal, Quebec in Canada. Travis has Left Hemiplegia, a result of NAIT. Travis was undiagnosed when he was born but was later diagnosed with Cebrebral Palsy-Left Hemiplegia at 10 months old after his mom realized at 4 months old that he wasn't using his left hand at all. After being diagnosed with mild cerebral palsy, Travis was vistited by a Shriner when he was 4 years old and has been treated by the Shriner's Hospital for Children ever since. He has gone through yearly botox and serial castings to help him walk.

This trip to the Shriner's hospital was a little different and Travis under went surgery to release his ham string and lengthen his achilles tendon. NAITalie was waiting for Travis when he came out of surgery and returned to his room. Travis' younger brother Nathan (born with 185K) was a treated pregnancy with IVIG twice a week. NAITalie spent her week with both Travis and Nate at the Shriner's Hospital for Children in Montreal. NAITalie than had her second airplane trip and returnned to Saint John, New Brunswick (the home of NAITalie) where she started her journey across Canada through Canada Post. NAITalie landed on the west side of Canada in British Columbia where she will continue to travel back across Canada and will continue her journey to the United States of America and then onto Austrailia. Our family hopes she has a safe and happy journey and look forward to reading about all her adventures.

Naitalie

Meet Naitalie!  She and her brother Nait are traveling around the world meeting families affected by the disease that they are named after, Neonatal Alloimmune Thrombocytopenia.  NAIT is a blood disorder caused by an incompatibility between the mother’s and the baby’s platelet types.  Platelets are the body‘s main clotting mechanism.  The incompatibility causes the unborn baby and mother to not be able to exist together.  The mother’s body creates antibodies that pass on to the baby.  These antibodies destroy the baby’s platelets causing the possibility of babies bleeding in their brains, abdomen and spinal cord prior to or shortly after birth.  This disease can produce life altering effects on the baby and can be fatal.  This disease has also produced many miracles:  babies and children that have overcome and defeated challenges and diagnoses along with those children still fighting effects of NAIT. These miracles, fighters and survivors are who the bears are meeting in their journeys.  Nait and Naitalie are not just named after the disease but also in honor of the victims and survivors.  
 
 Not only will Naitalie meet families affected by Neonatal Alloimmune Thrombocytopenia but she will also have the opportunity to inform others about the disease.  She is excited to tell the world about the prevalence, screening and treatment for this disease.  She is on a quest to gain attention from media to project awareness. 
 
 Naitalie yearns to meet these remarkable families that have had their lives changed indefinitely.  She wants to be hugged by these tiny fighters.  She hopes to join them in fun and in their struggles.  Maybe she will wrestle a crocodile in Australia, chase a moose in Canada, ride a horse in Kentucky or see a Broadway play in New York.  Follow Naitalie and her brother Nait on their adventures across the globe at www.naitbabies.org. Naitalie's journey starts in Saint John, New Brunswick, Canada.