Tribute

We, the families of the children who were patients of the late Dra. Manuela Martinez of Barcelona Spain, wish to deeply thank Bizen Chemical Company of Japan and Select Supplements of Carlsbad, California, USA for their most generous contributions to our families in supplying and preparing the DHA-EE oil that Dra. Martinez administered to our children in a very successful program which gave tremendous life improving benefits to our children.

Through your kindness and remarkable contribution to our children, you have given us the security of having available the necessary dosages of the DHA-EE oil to sustain the program and the success that we had enjoyed under Dra. Martinez’ gentle care.

We especially wish to make honorable mention and say most grateful thanks to the gentlemen who facilitated this entire effort for us, for it is through your selfless time and attention that you have made this most remarkable contribution to our lives:

Mr. Toru Kuyama
Bizen Chemical Co., Ltd.
Okayama, Japan

and

Mr. Hector Gudino
Select Supplements
Carlsbad, California, USA

From all the children and families who will benefit from your kindness,

Thank-you.

Alex & Ana Paula Chávez-Garduño, twins, 12 years old

Matthew Wulf, 14 years old

Jayla Morrison, 2.5 years old

Freja Bergin, 4 years old

Maximus Manciu, 9 years old

Yasaman Yazdanpour, 2.5 years old

Jackson Jinright, 5 years old

Peyton Kelly

Millie McMenemy, 5 years old

Gonzalo Tomei

Harry Parker

 Freja Bergner

We are very grateful to all those who have made it possible for our 9 year old son, Maximus, to be able to continue taking the treatment, DHA-EE. We first took Maximus to see Dra. Manuela Martinez in Spain when he was 15 months old. He was not doing well, and was not expected to live very long. Maximus was not eating or sleeping well, he was blind and his liver was well on the way to liver failure. Now, at 9 years old, Maximus can see very well without glasses, his liver enzymes are back to normal, he can walk and sleeps much better as well. Maximus is a very happy and energetic little boy whose quality of life was much improved by this treatment. We are so blessed to have experienced a doctor with so much dedication to her patients and research as Dra. Manuela Martinez. We are touched by your generosity in keeping the DHA-EE financially available so that the children can continue this lifesaving treatment.

With Warmest Regards,

Tara Cornell, Mother of Maximus Manciu

&

The Family of Maximus Manciu

I was with Tara when Max was first on life support before he was a year old.  It was so heart wrenching, such a helpless feeling, because it took quite awhile before they diagnosed him.  Although he’s severely disabled (the impression those who see him for the first time might have), he’s happy, playful, loving, and has a very distinct and sweet personality.  He has totally blessed our lives. With Dra. Martinez’ loving care and the DHA-EE he has had a quality of life that would not have been possible.

I had the pleasure and honor of meeting with Dra. Martinez whenever I accompanied Max and his parents on some of the trips to Spain.  I remember one occasion when Dra. Martinez took movies of Max and used them to show her peers his progress.  When he started walking, she confided in us that she didn’t think he would ever walk.

Walk!  He runs!  He doesn’t play like other children, but he has his own type of play.  He loves to play with light switches and pound on the walls.  He loves to swing and walk outside on the uneven ground, with us hanging onto him so he doesn’t fall.  He loves to ride in the wagon we bought for him with high sides to keep him safe, and I put a cushion in it for him to sit on, and he loves the wind when I run with him when he’s in his special stroller (quite the sight, I must say!)

A few times, I’ve set him on my lap and we went sledding down a small hill.  He has a game where he sits on my husband’s lap, gets down and starts to leave, and my husband grabs him by the straps on his bib overalls and pulls him back on his lap (Max giggles hysterically after a few times).  He loves to grab things on the table and toss them, so we have to keep things out of reach, or we put things that are soft that he can toss and make a game out of it.  We put gates around the television and other things that could be harmful to him or that he could damage.

We truly loved Dra. Martinez.  She was personable, approachable, and always caring and patient with the children she cared for.  I remember one special time when I had the opportunity to tell her how much she meant to us and our children, how much we appreciated all that she did for them.  It wasn’t too long after that when we learned she had passed away.  I am so thankful that I had that opportunity.  She is truly missed.

Jan Irwin, Max’s paternal Grandma

                  Max with his mother, Natalia (assistant to Dra. Martinez,)

                     Dra. Martinez, and Luke

We will never forget the day when they met. It was a magic moment when we wondered if Dra. Manuela Martinez was waiting to know them even before they were born! Years of dedication of her scientific mind converged in that moment when Manuela, Alex and Ana Paula got together to make a single lifeline.

Every week we used to buy a lotto ticket with the hope of winning to provide with more resources to Manuela Martinez foundation. We always were unsuccessful, maybe it was a sign from God saying that the “lotto” we had was Dra. Martinez herself.

We do believe in miracles. But God rarely makes miracles Himself. He uses humans as his instruments. Dra. Martinez was the hands of God saving the life of Alex and Ana Paula.

After searching the whole world we found in Dra. Martinez a light of hope and maybe the only person in the globe that could properly address their problem.

Alexandro & Adela Chavez

Matthew’s began life with a prognosis of just twelve short months to live due to the diagnosis of Peroxisomal Biogenesis Disorder. He was deaf, blind, failing to thrive; he could not digest his fats for his liver was failing and very-long chain fatty acids were building up in his blood, and he had low muscle tone. Matthew was dying in our arms. At five months of age he became a patient of Dra. Manuela Martinez and within three weeks of taking the DHA-EE his life began to make dramatic changes. He gained weight, became stronger, and began to be more interested in his world. His liver functions normalized. Slowly his brain myelination became normal for his age, and his development advanced. One day we noticed Matthew reaching for things – he was seeing! Matthew’s hearing improved as his auditory nerve matured. Remarkably, between seven and eight years of age, Matthew’s visual ERG no longer was flat, but showed normal waves. At school Matthew began to read, write with a communication device, and do math problems.

He graduated from eighth grade with honors, including honors in Algebra. Today, at age fourteen, Matthew is a published author of his poetry and essays as well as a composer of seven pieces of music. We are deeply grateful to Dra. Martinez for the DHA-EE that has made such a spectacular change in our son’s life and will be forever thankful for the kindness and generosity you have shown in providing for his continual need for the pure DHA oil. Through God’s merciful blessing and the dedication and compassion of people like Dra. Martinez and you a remarkable different story, a story of life and hope, is being written for our son which will never be forgotten.

 Brian & Joyce Wulf

Our son, Jackson was born on March 3, 2007; he had a normal birth other than some minor fluid in his lungs. He spent five days in the neonatal intensive care unit before being sent home with a clean bill of health. Only Two months after being home we started to have uncertainty about Jackson’s health. In June of 2007, Jackson spent weeks of testing at Children’s Healthcare of Atlanta. It wasn’t until August that we would receive his diagnosis. Jackson was diagnosed with a peroxisome biogenesis disorder, which falls in the Zellweger Spectrum. These are inherited conditions that damage the white matter of the brain and also affect how the body metabolizes particular substances in the blood and organ tissues. They are caused by defects in any one of 12 genes, that are required for the normal formation and function of peroxisomes (cell structures that break down toxic substances in the liver, kidneys, eyes, and brain, and synthesize fatty materials that are necessary for cell function). Peroxisomes are required for normal brain development and the function and formation of myelin, the whitish material that coats nerve fibers. Jackson has been fighting ever since. Jackson’s progress was initially made possible by Dr. Martinez in Barcelona, Spain. We first went to her clinic when Jackson was only seven months old. He was so weak and had such hypotonia, that he could barely lift his head. He can now support his head, and tries to sit (with support) for short periods of time. Jackson’s weeks are filled with therapies, but he loves school, his teachers and his classmates. He has a cochlear implant for hearing, he has lost most of his vision, his feeding is performed via g-tube, and he requires a wheelchair for mobility. Yet, not a day goes by that Jackson does not smile, or laugh, or fill our lives with joy. In the fall of 2010, Dr. Martinez lost her battle with cancer and we were forced to find new doctors to help our son. We have been extremely blessed to find a few dedicated Doctors at Kennedy Krieger, Johns Hopkins University, and McGill University, which have been researching his disease in hopes of one day finding a treatment and ultimately a cure. Due to the rareness of this disease, funding for research is minimal. With the help of family, friends, and community involvement, supporters of these children provide much needed aid to their cause. We thank the Bizen Company and Select Supplements for your help and support of our children.

Sincerely,

Travis, Angie, and Jackson Jinright

With my husband I gave birth to our  first child the 22nd of June 2007, A beautiful baby girl whom we named Freja. I had a normal pregnancy and delivery. Freja weighed only 2900 gr and her length was 48 cm. Immediately following her birth, the doctor started an investigation for Down’s syndrome due to the fact that Freja was a bit low in muscle tone and she also had a slightly different look. Freja also had wide cranial sutures, a single palm crease and the crease at the end of her spine. She also failed her newborn hearing test. The doctors did a chromosome analysis – it was normal. EKG was normal. Lung X-ray was normal. Since they could not find anything she was declared healthy ten days later.

In September 2007 Freja started having small seizures and the doctor began a new massive investigation due to this. Since birth Freja has always been difficult to feed. Freja       finally would eat on her own and she did gain weight, but it was really hard work for us. After the tests: EKG was normal. EEG was normal. Bone X-ray was normal. An ultrasound of her liver and kidneys showed an enlarged liver, but otherwise was normal. The CT was normal – no deformations. But the ABR was not normal, it showed Freja had severe hearing loss in both ears. The VEP was OK but the ERG confirmed Frejas vision loss. In October, we received the diagnosis: Zellwegers Syndrome, along with the prognosis that she probably would not live longer than 6 months, maybe 1 year. A skin biopsi was taken in October 2007 and sent to Holland.

The doctors in Sweden know very little about this disease and our doctor had       neither the time nor the commitment to help us find out any more information. Our doctor, considered one of Sweden’s foremost in this field, had previously only met 1 child with Zellwegers Sybdrome, and that was 20 years ago.

After intensive research from our side, we came into contact with Dra. Manuela Martinez in Barcelona. In January 2008 we traveled to see Dra. Martinez. Freja was accepted into her research program and also started her DHA-EE treatment at that time. Our best hopes were that the DHA-EE would produce positive results – particularly regarding her liver, vision, muscle tone and myelin development. Dra. Martinez was an truly amazing woman with a large commitment to our children. As a result of the DHA-EE treatment, today Freja’s liver status is normal  and she has also become a much more secure, social and happy child.

Thank you so much for helping us with continuing this treatment for Freja.

Love from Sweden,

Jakob, Elin & Freja

Jayla Amel Morrison was born on June 11, 2009. I had no idea that these two and a half years would be as challenging as they have been. At three months, Jayla was diagnosed with Peroxisomal Biogenesis Disorder (PBD). We really didn’t receive much information during that first meeting at Children’s Hospital, the only thing I really remember, was the doctor saying the majority of the babies diagnosed with this disorder only live a year or two and that there was no real treatment.

After many hours of research, we discovered the work being done in Barcelona by Dra. Manuela Martinez. We immediately made contact with her and in December of 2009, took our first trip to Barcelona. After just a short time of working with Dra. Martinez, we saw an obvious improvement in our beautiful girl. Prior to the visit Jayla showed all of the typical signs of someone with this horrible disorder, low muscle tone, irritability, and a general failure to thrive. That first trip was about four weeks and when we returned, you would have thought we brought back a different baby. Jayla was so alert, making cute babbling noises, and was even trying to sit up on her own! We were able to visit Barcelona just one more time before we lost our wonderful Dra. Martinez. As you can imagine we were all devastated by the loss, and scared to death. What would we do, who would we return to?

This is where you come in! The most generous contributions of The Bizen Company and Select Supplements have allowed our family, as well as the other families in our small group, to continue to receive what we consider the most precious gift. With Dra. Martinez’s formula for DHA-EE and your dedicated service, our Jayla is still thriving at almost three years old! She is motivated to move and talk as she prepares for preschool in the fall. She remains relatively healthy, is gaining weight, and getting stronger everyday. I just don’t feel that “Thank You” is enough, but we send it just the same along with a few photos of our precious baby girl.

Vanessa Morrison, on behalf of

The Morrison Family

Yasaman Yazdanpourwas born on 18th August, 2009 after a normal pregnancy and delivery. She weighed 3.5 kg. She refused breastfeeding. The doctor told us that this could be due to the fact that she had little strength in her jaws and so she becomes tired easily; so we had to help her with bottle-feeding. The doctor told us that this was abnormal, and changed her milk formula. One month after they changed her milk formula we found some abnormality in her vision. Finally when Yasaman was 6 months old she was diagnosed as having a Generalized Peroxisomal Disorder. After that while we were looking for more information about Peroxisomal Disorders on the internet we read about Dra. Martinez’s studies. We copied Yasaman’s medical notes and sent them to Dra. Martinez. We got an immediate response. We read some research papers from medical journals on her study. We were really impressed, so we arranged for a blood sample to be sent to Barcelona. Dra Martinez confirmed her Peroxisomal Disorder and the DHA levels tested as being significantly low. Then we went to Barcelona to visit Dra Martinez. When we went to Barcelona Yasaman was 11 months old and her weight was 7.5 kg. It was during our stay in Barcelona, no more than five weeks after starting the DHA therapy, we noticed the first sign that the DHA was helping. Her weight increased to 9.5 kg and we saw an improvement in her muscle tone, a decrease in her liver enzymes, better weight bearing on her legs and just an improvement in general. At last we felt like there was hope; a way to do something positive for our girl. And as well, we had found a doctor who had a deep understanding and great knowledge of such a rare condition. It was a great comfort to us. We are so grateful to Dr. Martinez for her dedication and hard work in continuing the study. She has provided a way forward for Yasaman and children like her when nothing else was available. Unfortunately Dr. Martinez passed away last year and we were so worried about continuing Yasaman’s treatment. I also appreciate your help and support regarding the DHA capsules which is now really essential for our children.

Monireh Tehrani

First of all I would like to thank you and everyone involved in getting this DHA_EE produced for our kids. Thank you just doesn’t cover it but please know we are tremendously grateful to all of you for your hard work and dedication to this project and to Dra. Martinez’s Children.

Our Names are Paul and Diane McMenemy from Scotland. Our baby girl Millie was born on 21st November 2006.

After months of weekly tests Millie was finally diagnosed on 27th June 2007 with NALD a mild variant of Zellweger Syndrome. Millie’s consultant at the time held no hope for Millie surviving beyond her first birthday. We set out immediately to find out more about Dra. Martinez, who was mentioned by the consultant but he said there was no point, that Millie would not benefit from her trial in any way.

Within only hours of e-mailing Dr Martinez, she replied to us and said we should send a blood sample to her as soon as possible so she could be sure if Millie would be a candidate or not, she did not want us to travel there without being sure Millie may benefit from her trial.

After receiving the amazing news that Millie would be a good candidate for this amazing trial, we took Millie to Barcelona on 20th August 2007 for 4 weeks. We had our very first meeting with our beloved Dra. Martinez on 21st August 2007 where Millie received her very first doze of DHA-EE.

Before this point Millie was a very poor feeder and she was mainly fed via a nasal gastric tube. The most she would take orally was about 100ml of formula milk (Neocate) per day, and the rest went down her tube. Dr Martinez advised us on nutrition for Millie…that she needed real food…so she suggested we add baby cereal to her Neocate formula. Within 3 weeks of starting DHA-EE and adding cereal to her feeds, Millie started to take 4 x 200ml feeds per day! She was also completely blind as previous tests had shown but in just this short time her eyes started to stop spinning and steady up…she was trying to focus! One day, when we were on the train on our way back from one of our visits with Dra. Martinez, the usual voice came over the tannoy announcing the next stop and Millie’s eyes widened as if she had just heard something for the first time! Myself and Paul were ecstatic!

Millie’s initial progress was absolutely amazing. She started to support her own head, sit up almost unaided, she would reach for toys, play with her toes, pull her feet to her mouth! These were all things that we thought we would never see her do and they were all things she showed no signs of doing before she started her ‘magic Medicine’.

In November 2007 and December 2007 Millie fell ill will a mild virus. Both these instances put Millie off her food. She went back to taking just tiny amounts of food and by January she was back on NG feeds. Because the tube was so thin we couldn’t put her normal thickened feeds through it, therefore it had to be just milk (Neocate). Dra. Martinez advised that we must get a Gastrostomy tube done for Millie as soon as possible so we could go back to her normal feeding. She needed the nutrition as well as the DHA-EE. It took six months for our doctors to FINALLY do the G-Tube operation and by this time we slowly watched Millie fade away in front of our eyes, she lost every single bit of strength in her tiny body. She was back to being a baby, unable to sit up, reach for toys, bounce her legs to music and she lost her swallow reflex all together. The one thing she held on to was her smile. She still had a little vision and she definitely still had her awareness of her surroundings and this I am positive is all due to Dra. Martinez’s DHA!

We have had to fight constantly with doctors and medical staff with regards to what we feed Millie as well as everything else that is involved in her care, but, one thing was constant…Dra. Martinez… our Guardian Angel…she was a constant source of wisdom and support and without her, without her knowledge, without her determination, without her love and passion for our children and most of all without her DHA-EE – our ‘Magic Medicine’ – we are 100% positive that our precious baby girl would not be here today and we would not have 5 years (and counting) of happiness and precious memories that we owe all to Dra. Manuela Martinez.

Paul & Diane McMenemy

Millie’s first meeting with Dra. Martinez in August 2007

In loving memory of

Millie McMenemy 2006-2013

Jackson Jinright 2007-2013

Omari Joel Buchanan 2012-2018