Tuesday 1 November 2011

Naitalie had a great visit to Prince Edward Island, Canada

Naitalie had a wonderful visit to Prince Edward Island.  We went to Walmart,  Queen Elizabeth Hospital, University of PEI, Family Resource Centers, Tim Hortons, Vernon River School, and had visits from Journalists.  We joined in a hockey practice and met the wonderful family and friends of the MacCallum/Drake family. We passed out information sheets and cards all around Charlottetown and Montague areas.We had many discussions about NAIT and our hopes for research, treatment, and screening.  The wonderful members the naitbabies organization  had the "Travelling Bear" plan long before my terrifying introduction to NAIT  11 months ago. It was very heartwarming to have my children snuggle with a bear that these families have hugged and will hug. I am so thankful for the support they have given our family, and I admire the support and advice they are able to offer to others.  We are looking forward to fallowing the adventures of Nait and  Naitalie as they continue to visit these lovely families. 

Sunday 30 October 2011

Touring around Charlottetown

We went to some PEI tourist attractions over the weekend.  I enjoyed the smell of Tim Horton's coffee but decided to try a Timbit.  My Brother Nait will be asking many questions about these Tim Horton Timbits. He was recently bragging about the tea and scones he tried in Ireland.  I also met Anne of Green Gables and had a wonderful chat with the lady at the Anne store. We then stopped in to visit Lincoln's Nanny and Great Nanny who were very excited to meet me after seeing me in the newspaper. I now have to rest up for a busy day tomorrow.  We will be going to Lincoln's physiotherapy session at the hospital where he was born.   I have heard great things about the staff at   the QEH and I look forward to meeting them.  And tomorrow is also Lincoln's first Halloween!

Friday 28 October 2011

Naitalie visits Vernon River School

This morning i found out we were going to Vernon River School :) Lincoln and I were both very excited.  We met Aiden in his class with the grade 1 and 2 students.  We talked about my travels, the hopes for research, treatment, and tests for NAIT.  Aiden  passed out some gummy bears and berries with information cards for parents. I was very impressed by the questions the children and teachers were asking! 

Thursday 27 October 2011

Naitalie learns how Lincoln and Aiden became NAIT survivors and enjoys outdoor adventures..

This morning we met with two local newspaper reporters.  I learned all about Lincoln's diagnoses with NAIT and the treatment he received. The reporters were very interested in this disease that not many are aware of.  (Article links below) You can read about the "MacCallum/Drake" story on the naitbabies.org website under "Our stories" the website link is on the upper right of this page.  After School, I was very exited to hear the kids suggest we go for a walk in the woods.  It was a bit chilly but Lincoln kept me warm with his blanket.  He also held me back from fishing in a river we came across. My favorite part of the day, was learning about a special memorial place made in memory of baby Dennis which can be seen from both boys bedroom windows. After joining the nait social group and meeting wonderful people who also have angel babies, they have learned of many ways to keep his memory alive and this helps with grieving his loss. I am a very lucky bear to be visiting these families. Our article in The Guardian News Paper http://www.theguardian.pe.ca/News/Local/2011-10-28/article-2788041/Mother-fighting-for-prenatal-screening-of-blood-disease/1

Wednesday 26 October 2011

Naitalie visits a playgroup and skates around a PEI rink

I met a delightful bear in Lincoln's room this morning. He told me all about our plans for the day.  He showed me some print outs all about me, and showed me some baggies with gummy treats and information cards. Our first outing was to the Families First playgroup at our local Church with baby cousin Maggie.  Many children were dressed up for a Holloween party.  We gave the ladies from Families First Family Resource Center some information papers so they will be able to send any future families affected with NAIT to http://www.naitbabies.org/ for information and wonderful support.  After supper we went to Aiden's hockey practice. He even took me for a skate around the ice.  After practice we passed out some baggies with the treats and cards to his team mates.  Tomorrow we are meeting with some local newspaper reporters to tell  the story about me, and how Aiden and Lincoln  became NAIT survivors. 

Tuesday 25 October 2011

Naitalie arrives on Prince Edward Island


It was a rainy day when I arrived in Vernon River, Prince Edward Island.  I was hanging out at the post office and peeping though my travel box when I spotted a lady across the road. She opened up her mailbox and started jumping with excitement.  She headed straight over to get me :) I was then brought into a warm cozy home and I heard a baby babbling.  I just had to meet this baby and I couldn't stay in this travel box any longer so I popped out! Lincoln spotted me and came right over to give me a big hug :) A few minutes later, children arrived back from school and they were asking many questions about me.  Lincoln's big brother Aiden took me over to a  mat and we all sat in a circle with a globe.  Marin then showed the children all the places I have travelled so far. She also showed them where my brother Nait has travelled. We then looked at http://www.naitbabies.org/ website and saw all the great pictures from our blogs.  Now it is time for homework and bed.  I wonder who I will get to sleep with tonight ...

Sunday 18 September 2011

Weekend Activities with Caleb and NAITaile


We had a great weekend with NAITaile and Caleb. First we went to visit our friend Calum in Burlington. Caleb and NAITaile had a nap while Calum held us tight! Then on Sunday we went to the Terry Fox Run. Just like Terry, NAITaile and her brother NAIT have had to overcome a lot of obstacles. And just like Terry Fox, Caleb never gave up.



He kept fighting and staying strong! It was a beautiful day to be outside. Even though you can't see Caleb in these shots, he is cheering NAITaile on from inside his warm bassinet! It has been great having NAITalie here with Caleb but we know that we need to send him on to his next family. We are still trying to organize a fundraising event at Caleb's mommy's school but we don't want to hold NAITalie up. We also wanted to go to the hospital where Caleb was born...we will see if we can do this tomorrow, if not Caleb's mommy will write a blog about it later! Take care everyone!

Friday 16 September 2011

NAITalie arrives in Toronto, Ontario to vist Caleb


NAITalie arrived safely to Toronto and I don't know who was more excited to see each other; Caleb meeting NAITalie or NAITalie meeting Caleb. They had a great time reading the journal together and discussing their plans for the weekend. They are going to walk in the Terry Fox Run on Sunday and hopefully visit the hospital where Caleb was born on Monday. Stay tuned to hear of their adventures together!

Tuesday 30 August 2011

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

Thursday 25 August 2011

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.

Wednesday 24 August 2011


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

Monday 22 August 2011

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 :).

Sunday 21 August 2011

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.

Thursday 18 August 2011

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.

Thursday 11 August 2011

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.