May 2005 Archives
BBC News website meets the man who has helped families to have genetically-matched babies to treat sick siblings.
Dr Yury Verlinsky was amongst the first in the world, and the first in the US, to introduce chorionic villus sampling (CVS) - a way to diagnose conditions while babies are still in the womb.
He then helped devise a way to diagnose conditions in test-tube babies before they are transferred into the womb.
This shot him to fame when a family used the technique, called PGD, to have a baby whose cord blood could save the life of their other child who was sick with Fanconi anaemia.
Read the BBC report here.
Más autografos aquí.
There's no substitute for George R. from the CAT/CR at Children's Hospital Boston, he has vast experience in finding veins, he made Andy happy and made his IVIG infusions as "easy as pie".
Here's something that may help the others.
The 'vein entry indicator device' beeps when the IV needle finds the vein.
Developed by an Israeli company Vascular Technologies Ltd.
The electronic gadget makes a sound within 0.1 seconds of the needle's entrance into the vein's lumen.
Company website here (the website also beeps).
Farmacias del Ahorro the number one Mexican pharmacy retail chain made a donation to The Andy Fund in the Division of Immunology and to Dr. Raif S. Geha and his expert team or doctors and researchers at Children's Hospital Boston.
This is the first time in history that a Mexican company participates with the best hospital in the world for children, Children's Hospital Boston, supporting Dr. Raif S. Geha.
More about Farmacias del Ahorro here.
More about Dr. Raif S. Geha and the Department of Immunology here.
More about The Andy Fund here.
FARMACIAS DEL AHORRO
Founded in 1991, a Mexican corporation founded by Don Maximiliano Leonardo Asturias and with support of the dynamic Lic. Antonio Leonardo Castañon. The company started with 2 pharmacies and 30 people offering variety, service and price. Today with more than 400 locations, Farmacias del Ahorro is without doubt the leading pharmaceutical product retailer in Mexico. For more information about Farmacias del Ahorro visit http://www.fahorro.com.mx
CHILDRENS HOSPITAL BOSTON
Founded in 1869 as a 20-bed hospital for children, Children's Hospital Boston today is the United States of America leading pediatric medical center, the largest provider of health care to Massachusetts children, and the primary pediatric teaching hospital of Harvard Medical School. In addition to 325 pediatric and adolescent inpatient beds and comprehensive outpatient programs, Children's houses the world's largest research enterprise based at a pediatric medical center, where its discoveries benefit both children and adults. More than 500 scientists, including eight members of the National Academy of Sciences, nine members of the Institute of Medicine and 10 members of the Howard Hughes Medical Institute comprise Children's research community. For more information about the hospital visit: www.childrenshospital.org or www.childrenshospital.org/research/
THE ANDY FUND
The impact of the story of a brave boy and his family. Andy was born with in Mexico a primary immune deficiency caused by a mutation on the NEMO gene. The story of his hospitalizations and constant battle against infections, support from his family and friends including fund raising efforts is included at a website created by Andy's Dad. Thanks to the collaboration of more than 100 doctors and numerous laboratories in the United States and Mexico Andy found his diagnosis at Children's Hospital Boston. His sister Sofia born March 14th, 2004, donated stem cells from her umbilical cord to save his life. On October 29th, 2004 Andy had a stem cell transplant with stem cells from Sofia. Today Andy has a brand new immune system and as it gets stronger, he lives a normal life. For more information about The Andy Fund visit http://www.andy.org.mx
Dear Andy,
I got this autograph for you. It is from the Lead singer of the band, BOSTON. His name is Brad Delp. He told me to tell you that he hopes you feel better really soon!
Sincerely,
Erin Hutchinson
Find more autographs here.
More from yesterdays news regarding patient specific stem cells via BBC news.
Read the article here.
South Korean scientists say they have made stem cells tailored to match the individual for the first time.
Each of the 11 new stem cell lines that they made were created by taking genetic material from the patient and putting it into a donated egg.
The resultant cells were a perfect match for the individual and could mean treatments for diseases like diabetes without problems of rejection.
Read the complete article via BBC here.
Very good article by Gareth Cook at the International Herald Tribune talking about Children's Hospital Boston plans to clone human cells.
Consider the case of a boy with sickle cell anemia, a potentially lethal disease in which a genetic defect causes red blood cells to form improperly. The scientists envision taking a skin cell from the boy and removing the nucleus that contains his DNA. They would then place this DNA into an egg cell, likely one donated by his mother, and then prompt this egg cell to begin dividing. This would be grown for several days, becoming an embryo whose DNA matches the boy's. From this, scientists could then extract embryonic stem cells, which can become any cell - including blood - in the body. With this done, the scientists would correct the stem cells' DNA, using a proven laboratory procedure to change the portion that causes sickle cell anemia. Then, in a much more difficult step, they would coax the embryonic stem cells to become blood stem cells, providing an almost perfectly matched bone marrow transplant.
Read the article via IHT here.
There's a lot of places on the Internet that I visit searching for information regarding primary immune deficiency, ectodermal displasia, infectious diseases, stem cell transplants, and medicine in general.
I decided to put all of them together at the andy medical news, news feeds from The New York Times, Wired, BBC News, Reuters, Yahoo, NewScientist, International Herald Tribune and others.
Heres the link.
FELIZ CUMPLEAÑOS ANDY
The BBC is looking at the issues surrounding storing or banking cord blood.
The blood is a rich source of stem cells, which may one day be used to treat diseases such as leukaemia. Private companies offer a banking service for concerned parents. But doctors have voiced concern about playing on parents fears, and the BBC has learned a group of medical experts is to investigate the area.
Read the article via BBC here.
A letter from Roberta,
Hi Andres & Paulina,
We had a busy week learning about the sea & sea creatures. This month we will work on the same things his class is -
sand
water
the water cycle
and
eggs
Andy is beginning to recognize patterns in words and sounds - he is getting very close to being able to read words! Yay!
The words he picked out today
(Pie - for Dr. Pai)
pen - penguin - pencil (all with the same beginning sounds! It is very exciting!
Roberta
I'm writing a book!
Paulina remembers more things than I do, she has a better memory(among lots of other things). I constantly go to Paulina with questions looking for more details so when I say 'I" it really means 'We'.
I (we) started to write formally around February 23rd. 2005 after Andy's last hospitalization.
I decided to write in English because the majority of the people that have helped Andy talk in English.
This book will be our way of saying THANK YOU.
We also hope to inspire other parents or couples going through similar situations.
It's difficult for Paulina and I to go back and live again the more than 600 days of hospitalization to be able to write this story, but its worth it.
The book is in chronological order starting May 15, 1999 and until today. It is currently 43,175 words, 114 pages letter size using Arial font size 12.
Today I'm writing about the events that happened on September 11th 2000. The day of our first arrival to Children's Hospital Boston Emergency Room.
The book falls under the following general categories:
Parenting
Inspirational
Health
Adventure
Biography & Autobiography
More categories below where it says "Posted to"
I'm looking for an editor (who will be very busy) and for a publisher.
If one of my two blog readers knows an editor and a publisher please email me to andy [at] andy [dot] org [dot] mx
I sent a copy of the draft of the book to one of Andy's doctors and I just received his comments:
HOLY COW, you must have a ridiculously extensive set of notes! Or a photographic memory. This is just amazing. I find it absolutely amazing and gripping and real.
Feliz día de las Madres!
Happy Mothers Day!
Kelli Cole sent her Boston Marathon medal to Andy.
"He has earned it for all the 'marathons' he has gotten through! He definitely helped me get through this years race as well."
Thank you Kelli!
El Tío Victor hablo ayer en el radio sobre Andy!
EL NIÑO NARANJA
04 DE MAYO DEL 2005
VICTOR TREVIÑO
...........
HAN PASADO 185 DIAS DESDE EL TRANSPLANTE Y ANDY TIENE YA TRES SEMANAS QUE GRACIAS A SU NUEVO SISTEMA INMUNOLOGICO NO NECESITA DE MEDICINAS PARA MANTENERSE SANO. SU NUEVO SISTEMA INMUNOLOGICO LO ESTA DEFENDIENDO!
AHORA SE PREGUNTARAN USTEDES, PORQUE LES DIJE QUE HABLARIA DEL NIÑO NARANJA…
LA RAZON ES QUE ESTE COLOR HA SIDO UNA CONSTANTE A LO LARGO DE ESTE PROCESO: EL APELLIDO DEL DOCTOR QUE DIAGNOSTICO LO QUE LE PASABA A ANDY ES “ORANGE” QUE ES NARANJA EN INGLES, EL NOMBRE DEL GEN QUE CAUSABA LOS PROBLEMAS ES NEMO QUE COMO SE ACORDARAN ERA UN PESCADITO NARANJA EN UNA PELICULA DE WALT DISNEY… Y AHORA TODOS LOS AMIGOS DE ANDY ESTAMOS BUSCANDO RETRIBUIR AL HOSPITAL DE NIÑOS DE BOSTON VENDIENDO PULSERAS NAJANJAS.
Lee todo el articulo aquí
