Adrenoleukodystrophy appears still to this day, to be a disorder that is misdiagnosed and not understood or known by many in the health community.  The developer of this site, mind you is not a medical professional just a parent advocate for ALD.  The first sentence of this paragraph is based upon observation and experiences while learning about and dealing directly with Adrenoleukodystrophy.

There are those in the health community that do know of the disorder very well and they are in constant search for a cure and better ways to combat the disorder.

For those unaware, it is the intention of this site to provide them with the tools through the links provided on the home page to access information and contacts regarding ALD.

The families listed upon this page are to provide all who view it some insight beyond simply giving numbers and statistics.  For those that view this page that are not part of the ALD family, it is not the intention of this sites creator providing this page for viewers to to be sympathetic or feel sorry for the families listed on this page. 

The goal is to promote Awareness for Adrenoleukodystrophy, so that new families that join the ALD family will know they are not alone on their journey.  Another goal is promoting the ever so important awareness within the medical community, perhaps those not aware will heed the call to learn more and communicate between each other regarding this disorder and other rare disorders.

O'Toole Family - New York

Two ALD son's - 8 year old symptomatic diagnosed in Jan of 2009 who has received a Bone Marrow Transplant to stop the disorders progression. Doing well post-transplant at time of this writing.  1 year old asymptomatic son who was diagnosed after learning of 8 year olds diagnoses.  8 year old was diagnosed with Addison's Disease 2 years prior to being diagnosed with ALD.  Family is grateful for the ALD Foundations web developers taking the time to include vital information to internet search engines such as Google.  The family learned of the disorder by doing a simple Google search on "Addison's Disease" to see if something was missed during initial research two years ago after 8 year old began to decline on many levels.  The ALD Foundation was listed on top of the search results and information learned was brought forth to a Neurologist for further review.

More information on this family - http://otoole4.info/

Asymptomatic ALD son - Diagnosed in 2004 and is now 18 years of age. Family learned of their son's ALD diagnoses after learning of his  grandfather being diagnosed with Adrenomyeloneuropathy (AMN).  His grandfather passed away at the age of 68, two and a half years after being diagnosed with AMN.

Their son, a high functioning Autistic, is very intelligent and is looking forward to attending college in the fall to study math and music.

Their ALD son also had a great-uncle who diagnosed after death of having the ALD gene, this was learned after the AMN diagnosis of the grandfather

Their ALD son has a cousin who is 11 years of age who is asymptomatic and being followed by medical professionals familiar with X-linked ALD.

The mother of this family suffers from AMN related symptoms, she also has a sister who suffers from many physical symptoms of AMN.

Adrenomyeloneuropathy (AMN) - is what the disease is known as when it gene becomes active in adulthood.

ALD son who is 7 years post-Bone Marrow Transplant at the time of this writing and is doing well.

Family does not have a website but the University of Minnesota has their son's story on their website visit - http://www.med.umn.edu/BMT/Program/ucb/Collin.html

Medwid-Horak Family - Ontario, Canada

ALD son diagnosed in 2001, at the time of this writing he is 5 years post Bone Marrow Transplant and 11 years old.  Family is grateful for the unknown donor who gave their son new seeds of life.

Mother of ALD son is experiencing AMN symptoms as well.
 

More information about their son's journey visit - http://mamashell.blogspot.com/

Family with three children two sons and one daughter.  One son who has Adrenoleukodystrophy and is currently 13 years of age at the time of this writing. He is three and a half years post-bone marrow transplant for Adrenoleukodystrophy.  Their son was the first "Mucomyst" boy transplanted for late-stage ALD at the University of Minnesota in November of 2005. 

Their son is doing well and has had no progression since the transplant.  Due to the damage caused by the disease prior to the Bone Marrow Transplant, their son utilizes a motorized wheelchair and has a speech device for communication.  He also has Addison's Disease.

More about this family - http://chase.tbcdecatur.org/

Family with three son's, two of them having Adrenoleukodystrophy.  One ALD son had a successful transplant in 2003 but is blind.  The oldest ALD son died a year later at the age of 10.

Link to this family - http://www.caringbridge.org/in/bradgabe/

Seven year old ALD son, who was diagnosed in June of 2008.  Their son received his first bone marrow transplant in December of 2008.  In January of 2009 the family found their son's new cells did not hold and his own cells came back.  He has received a second transplant.

After the second transplant, one month and three weeks later testing results showed that the majority of the cells in his system were that of his own and  not of the four donor cells that he had received in transplant one and two.  Today (5/27/09), the day of this writing he is receiving a third bone marrow transplant.

He is doing great during this current milestone.  His ALD has not progressed and his functions has not declined.  He is active as can be since his diagnoses. 

He is thus far the only ALD boy who has had 3 bone marrow transplants at the University of Minnesota.

More information regarding this family -  http://www.caringbridge.org/visit/dominicjflores

Family has a four year old ALD son who was diagnosed at birth because of his older ALD brother who was symptomatic at the time of his birth.

His older brother was diagnosed in 2003 at the age of seven to have Adrenoleukodystrophy and was not eligible for bone marrow transplant at that time as his condition was too advanced.  He passed away at the age of 10 in 2006.

After the older brothers passing 6 weeks later the two boys older sister was diagnosed with AML and spent 9 month in a Pennsylvania Children's Hospital.  Their sister has been in remission for 2 years and will be graduating High School in the very near future.

Their four year old son is currently being treated post-bone marrow transplant in Minnesota.

More on this family refer to this link - http://www.caringbridge.org/visit/seansuppan

Family has a 13 year old ALD son, who at the age of three was diagnosed with ALD and Addison's Disease.  Son has small lesion on frontal lobe with no changes in the past four years. ALD son is on KTC Mustard Oil and a low fat diet. His mother and 23 year old sister are both carriers of Adrenoleukodystrophy.

ALD son who is in the Lorenzo's Oil Study and is doing very well!  Mom's uncle died of ALD at age 6, two uncles died of AMN in their 40's, and her older brother died of ALD at age 6.  My sister is a carrier, her son has ALD, and her daughter is a carrier.

More information on this family - http://www.caringbridge.org/wy/andyspage/

Family has a seven year old son who was diagnosed with Adrenoleukodystrophy in January of 2008. Due to the disorders advanced progression he was not eligible for a bone marrow transplant.

ALD son diagnosed in 2003. At time of diagnoses he was only given 18 months to 3 years to live.  He is still alive today, although mentally and physically performing at the level of a 2 year old.

More information on this family visit - http://www.caringbridge.org/nh/jamessturtevant

ALD son diagnosed at the age of 8 in 1999. Initially discovered, was that he had Addison's disease after and Addisonian Crisis during a bout of Tonsillitis. Upon further investigation their son was found to have Adrenoleukodystrophy.

25 years after this families son's grandfather died at the age of 42 of an "unknown cause" the family discovered that he suffered from the adult form of ALD. He initially became ill and died within a year with the cerebral form of ALD in adulthood. This family knows of no one else who has suffered from the disease, so they have no idea where the genetic X-linked ALD began.

Their ALD son who is now 18 has not shown any signs or symptoms of ALD or AMN. He still takes Lorenzo's Oil and is well looked after by the National Hospital for Neurology and Neurosurgery in London where he was transferred to from the Great Ormond Street.

Family advises at the time of this writing that his Addison's disease is under control from day-to-day. The family continues to hope and pray the he stays well and free from Adrenoleukodystrophy Symptoms.

ALD son experienced a grand mal seizure in April of 2008 while in attendance at his older brothers USMC graduation.  He was diagnosed with late stage cerebral ALD in August of 08 after more symptoms presented themselves and seizure. A complication that delayed the diagnoses was the failure of the second Neurologist he saw to follow the advise of the first Neurologist to test for Adrenoleukodystrophy.

He has three biological brothers and an adopted brother who are not affected by ALD.  He has three sisters, of them two are carriers.

His mother is a carrier with fairly severe AMN symptoms.  Their sons maternal grandmother is also a carrier.

Their son has received a Bone Marrow Transplant with a sibling donor, his Marine brother.  He engrafted quickly but due to a stroke on his right side of his brain he had no movement on his left side until recently with some minor improvements.  He does not stand or walk, completely vision impaired, speech impaired, as well as some hearing and processing loss.  He also has experienced some new difficulties with swallowing and chewing.  He has regressed to an age three level.

With everything he has endured he still maintains a fabulous sense of humor and laughs all the time. He love practical jokes.

More about this family - http://www.caringbridge.org/visit/jackmccall

Family has two ALD sons. 

Eldest son 16 years of age in 2009 and was diagnosed in 2001.  He was completely dependent within 6 months following diagnosis.  Currently he is fully symptomatic.

The eldest son's younger brother is currently 9 years of age at the time of this writing in 2009.  He had a bone marrow transplant in May of 2008 and was just recently discharged in May of 2009 from the BMT clinic.  All is well with him at present.

The boys mother, Sara Hunt runs ALD Life in the UK.  ALD Life is a support group, charity and website open to all worldwide.

More on this family and ALD Life visit - http://www.aldlife.org