Welcome to the 3rd newsletter of www.naitbabies.org
In This Issue
NAITBABIES.ORG INVITATION TO JOIN SOUNDING BOARDS
Exciting news...2012 has started with a bang! Naitbabies.org have been invited by Jens Kjeldsen-Kragh, MD, Ph.D., Chief Scientific Officer, Prophylix Pharma AS, Norway, to participate in a FNAIT 'Sounding Board' that is to be developed. It is a huge honour that naitbabies.org has been acknowledged by the medical profession as a worthwhile group with valid and useful opinions. It is also hugely exciting to be involved with a company actively researching the prevention of NAIT. Dr. Kjeldsen-Kragh and his colleagues have been researching development of a new prophylactic treatment that will prevent antibodies being made to mothers who are HPA 1a negative.
NAIT or FNAIT is classified as a rare condition. By being classified as such, it means that companies intending to develop medicinal products for the diagnosis, prevention or treatment of life-threatening or very serious conditions that affect not more than five in 10,000 persons in the European Union can apply for 'orphan medicinal product designation'. Benefits and incentives are offered to pharmaceutical companies to encourage them to develop medicinal products for such conditions, and on 27 October 2011, orphan designation (EU/3/11/922) was granted to Prophylix Pharma AS, Norway, by the European Commission for human platelet antigen-1a immunoglobulin for the prevention of fetal and neonatal alloimmune thrombocytopenia due to human platelet antigen-1a incompatibility. The Committee on Orphan Medicinal Products (COMP) of the European Medicines Agency administers the granting of orphan drug status. The COMP evaluates the application and makes a recommendation for the designation which is then granted by the European Commission.
This is a huge step forward in the fight against NAIT, and while it is likely to be some time before a product comes to market, things are certainly moving in the right direction. The inclusion of naitbabies in the FNAIT sounding board is not only exciting, but an amazing opportunity to be part of something that is going to be life-changing for many, many families.
Further information can be found here:
Watch this space....In September 2011 Naitbabies.org was contacted by Dr Dick Oepkes (fetal medicine specialist from the University Medical Center in Leiden, The Netherlands) regarding their new screening research called PATRIA (Prevention of Alloimmune Thrombocytopenia-Related Intracranial haemorrhage and Adverse outcome) and they requested that we join them as a patient advocacy group. This is another exciting opportunity for naitbabies to be involved with a hugely important and significant project. The Dutch team have submitted details of their research to the European Commission and are currently waiting on the decision regarding funding for their work. We will be able to bring you news of the Commission’s decision later in the year – fingers crossed the outcome is good.
Meeting not one, but four NAIT mums!!!
December 2011 was a month of many exciting events - my birthday, and of course Christmas and New Years Eve, but something in between those dates was far more special. I took a journey to the UK to finally meet four other NAIT mums in person! I wasn't nervous, although some people would be meeting someone they have never met before. To me, it was just like catching up with old friends. I met Nia (from Wales - mum to Elain and Síon) in Manchester and fulfilled an ambition of mine by visiting the Hard Rock Cafe!
After one night in Manchester we were ready to move on. The following day we met Rachael Walker (from Yorkshire - mum to Otto, Tove and Tippi) for a spot of lunch. After a huge goodbye to Nia, Rachael and I travelled to her house in Wakefield. I was so blessed to meet her gorgeous little children and her husband. I'm so grateful to Rachael and Jamie Walker for making me feel so welcome.
Rachael and I then travelled to the train station to collect the lovely Sue Tandy (from St. Albans - mum to Vanessa and Ryan) who was an absolute joy to meet. We travelled back to the Walkers and watched the very emotional video of Stacy Corke's experience with little Jack's pregnancy (BBC documentary - Life Before Birth).
We had to wipe the tears away because we were going for dinner at Pizza Express with Gemma Miller (from Leeds - mum to baby Oli) It was absolutely lovely. Sue and I called it a night and Rachael went home to a poorly Tippi.
The next day was home time for me. I had a train to catch but still had a few hours with Sue and Rachael. I absolutely relished the time we all had together.
If you are a NAIT mum, and have never met one before, I do suggest checking if there is someone else in your area. It is an amazing experience that you will never forget, and don't tell the other girls, but I did shed a little tear or two on the train to the airport! ‘Twas the best birthday I ever had! :) Louise Gill
AWARENESS / FUND RAISING INITIATIVES
School girls raise money for Naitbabies.
Just before Christmas, my gorgeous niece Ellie phoned me and told me that they had been discussing fund raising ideas in their charity group at school. She said that she was going to spend her Christmas holiday raising money and the charity she had chosen to support was naitbabies. Ellie is 7 (almost 8), and her little cousin Ethan was born 18 months ago with NAIT. Ellie has been keen to learn about the condition and what Ethan has been through, and was excited to be able to do something to help. She was sent the NAIT bear to help her to explain at school what NAIT was all about, along with some leaflets and stickers to hand out to her teachers and friends. Ellie and her best friend Elena decided that they wanted to raise money for naitbabies together. They are both in year 3 at Halterworth School, Romsey and are members of the charity group. Between them they decided to do a sponsored read. The pair of them spent their entire two week Christmas holidays sat reading books. They got their teachers, friends, parents, friends’ parents, parents’ friends, family and anyone else they could think of to sponsor them. Ellie kept me updated with how many pages she had read – by day two she had already read 283 pages! In total she read 10 books which was a total of 1918 pages. Elena too read an incredible 10 books and between them they raised a whopping £270! Ellie said "A group of us at school wanted to raise some money for charity. Me and Elena decided to raise money to help my cousin Ethan and babies like Ethan. I really enjoyed reading all the books, the Secret Seven's were my favourite”.
Ellie (right) and Elena
Marian and her husband Luon met through a mutual friend in 1994. They now live in San Jose California with their 3 Children Jordan Luon (13) Jalyssa Elaine (4 ½)and Jaslynne Faith (2 ½).
Marian blissfully became pregnant with Jordan in 1998. The pregnancy went great and he was born by caesarean section after a long labour of 24 hours. “The moment I saw him, I fell in love” recalls Marian. She was fortunate to have an easy recovery feeling back to normal only 2 days later.
Eight years later in 2006, Marian was thrilled to become pregnant again after trying for a second child for a very long time. This pregnancy went well other than her diagnosis with gestational diabetes which was monitored weekly by her dietician. A caesarean section was prearranged because of previous method of delivery. When Jalyssa was born, Marian remembers how beautiful she was. Shortly after birth Jalyssa had blood taken from her heel for a diabetes test. Her heel would not stop bleeding so they took her to the NICU for further testing. A couple hours later the doctors returned to Marian saying “Your body tried to fight off your baby because you have a different platelet type”. Jalyssa had a blood platelet count of only 10,000 meaning she was at risk of hemorrhaging throughout her body. A safe count is 150,000 – 450,000. Marian remembers being at a complete loss by this diagnosis and all she could think was her baby may not survive. Jalyssa remained in the NICU for 4 days, where she received two platelet transfusions, four rounds of IVIG and a head ultrasound where they found a small dried blood spot on her brain. Her platelet count reached 150,000 and she was allowed to go home with follow up care throughout the year, which included blood testing and a second cranial scan at 3 months. The doctors told them the small brain bleed, or cyst, had gone.
Eighteen months later they were in for a big surprise, not expecting to have any more children the Thai family found out they were expecting their third child. Filled with fear Marian was sent to see a specialist and blood work was taken from both parents at the beginning of the third pregnancy. This was when they discovered they had a 100% chance of having another NAIT affected pregnancy. Marian's platelet type was HPA 1b1b and Luon's was HPA 1a1a. Doctors did not expect the baby to survive given the history of her previous baby, and recommended terminating the pregnancy. Marian was appalled with the doctor’s advice and desperately searched for answers. At 11 weeks pregnant, she came across the Yahoo NAIT support group. This is where she discovered treatment options provided by NAIT affected families across the world. She took this information to her doctor and a treatment plan was made. She began IVIG infusions at 13 weeks pregnant, receiving 2kgs weekly of Carimune or Flebogamma. Her doctor wanted her to receive her treatments at the hospital so they could monitor the baby both before and afterwards. Her husband was with her every Friday during the long treatments until it was time for him to return home to care for the children.
During this pregnancy they didn’t keep anything from Jordan. They explained that an anonymous blood donor was donating blood platelets for his unborn sister and Jordan decided to write a thank you card to the donor expressing his gratefulness, “thank you for saving my sister’s life, I hope you get everything in life to make you happy”. Marian is grateful for Jordan being such an amazing son “he never complained once about having to help out”.
She had PUBS at 22 weeks and it was discovered that the baby only had a platelet count of 9,000.
She immediately began taking 60mg of prednisone daily which caused some dreadful side effects. PUBS was repeated at 28 weeks and the baby’s platelets were at 34,000 which confirmed that her treatments were working. Jaslynne Faith arrived in this world 6 weeks early with a platelet count of 75,000. After two platelet transfusions and many rounds of IVIG her counts remained stable and, after 7 days in the NICU, she was able to come home to her family. Marian is grateful for the support from her mother, who helped with the children on a daily basis, her best friend Leakha and the many women she met on the Yahoo support group. “Not sure where we would be without these extraordinary people in our lives”.
Marian and her family have learned so much from having a NAIT affected pregnancy. “I learned that you never know how strong you are until being strong is your only option. It truly is a life changing experience. I feel I need to make a difference, need to raise awareness, spread the word so that others won’t feel as lost as we did. This is why I am involved with Naitbabies.org”. Marian is preparing for a walk with March of Dimes to help raise awareness. Information on the walk is listed under our upcoming events.
Jordan, Jalyssa and Jaslynne Thai
Andrea Palmer & JP Rivett - Spring Break Party April 7th 2012
Andrea and JP have organised a Spring Break Party at the Salt Bar in Hayle, Cornwall, UK.
“We are really excited about the upcoming event, it gives us a chance to spread awareness and get publicity for NAIT locally, whilst making it great fun and a laugh for everyone”.
“We will be holding a raffle with some great prizes donated from local businesses. The night will feature live DJ sets, with some funky music to make you want to dance!!! Plus much, much more!!!!” says Andrea.
Marian Thai - March of DimesApril 28th 2012
Marian will be meeting another NAIT mom Tracey Wilson for the first time while walking the 6 miles ‘Walk for Babies’ organised by the March of Dimes in San Jose, California. Marian is making shirts for the team of 6 to help raise NAIT awareness.
Gary Gill – 3 Peaks Challenge July 20th 2012 (Scotland/England/Wales)
This team event will visit Ben Nevis in the Scottish Highlands, Scafell Pike in the English Lake District, and Snowdon in the Snowdonia National Park, north Wales.
Gary has twin grand daughters who were born in 2010. They were premature and spent some time in the NICU. From sharing stories of time spent in the NICU with friend Stacy Corke, he learned of the condition called NAIT. He took a look at the Naitbabies.org website. “I casually took a look and read some of the families’ stories and soon realized how devastating it could be”. Gary wanted to do something for the cause and was inspired by Professor Murphy who ran the Oxford ½ Marathon for NAIT awareness. Gary then remembered a 3 Peaks challenge he heard about while climbing Ben Nevis with his wife Tracie and youngest daughter in 2009. He asked his brother Mike and Stacy to join him and they now have a team of 14. “We have a fitness program on the group page and everyone seems to be doing well, hiking, walking, running etc. Most are taking part in the training day on the 22nd April at Mount Snowdon, Wales, where they will get a real taste of what it is like to trek up a mountain”.
You can find more information on this at http://www.facebook.com/#!/pages/3-Peaks-Challenge-2012-for-Naitbabies/277906912229430
Gary (left) with brother Micky, in training on Mount Snowdon, Wales.