Anthony Billaney Case History

Anthony Billaney

 

 

February 19, 2013 Anthony Billaney made his grand appearance into the world.  He showed severe symptoms of hypotonia, was unable to suck, and did not cry. This alerted the doctors’ suspicions  and they decided to transfer him to a larger pediatric hospital where he was first stationed in the ICU. The following day he was moved to the intermediate care station and several tests were scheduled, including EEG and MRI. Several days passed. The results showed he had polimicrogyria. This triggered several further investigations and the neurologists drew blood to analyze the “fatty acids.”

When those results came back, the world seemed to collapse; a death sentence called “Zellweger’s Syndrome” was spoken.

 

 

Confronted with their son’s death, Dennis and Kristy faced their words  “There is no hope; nothing can be done; the only option is to go home and try to enjoy the time together with Anthony; be aware that he will die within six to twelve months.” That is probably the most terrible thing a parent can be told.

However, instead of collapsing, Anthony’s parents began an intense 24-hour day and night internet search, looking for any information which may help to change the prognosis.

Among hundreds of papers, there was one very helpful finding:  the papers of Dra. Mannuela Martinez and her work with ZS spectrum children treated with DHE-EE.  Most of the doctors at the local hospital honestly didn’t want to know or hear too much about Dra. Martinez or DHA-EE, since Dra. Martinez ran no double-blind clinical trial using DHA-EE for the known DHA deficiency in Zellweger’s Syndrome. “Lack of scientific evidence” seemed reason enough for doctors to not follow the information and her instructions. [Dra. Martinez considered it unethical to deprive a DHA deficient child of what he needed to live.]

Anthony’s parents decided there was no time to waste and they had nothing to lose. Kristy started to drink ten-fold of the daily recommended amount of algae-based DHA (because another mother whose daughter was a patient of Dra. Martinez said that she had been instructed to consume as much DHA as possible in order to increase DHA levels in her milk).  Amazingly, just as Anthony was reaching six weeks of age, his parents by their own efforts managed to organize the exact same DHA-EE formulation that Dra. Martinez had prescribed.

May 1, 2013, Anthony was able to go home for the first time.

Anthony Billaney

Most people involved with the treatment of Anthony noted increased positive signs of progress and development. He started to cry, suck, could move and even follow targets.  Unfortunately, there was never any blood work performed on Anthony’s fatty acids which could have backed up the findings in a scientific manner. He passed away after a night of severe apnea and seizures.  He now rests in peace and will be kept in memory forever.

Below are the only blood work results, measuring liver enzyme function, which shows some kind of improvement.  It is very well documented, that such improvements are “normally” not seen in Zellweger’s Syndrome, but rather a progressive degeneration, which was the absolute opposite of Anthony’s development after beginning treatment with DHA-EE.

In just two weeks after he was born (March 5, 2013) labs measuring liver function revealed Anthony was in distress (AST 720, ALT 266, GGT 207).   Liver function analysis drawn on March 25, 2013 (AST 995, ALT 524, GGT 477) were even higher indicating newborn cholestasis.  Anthony’s first dose of DHA-EE was April 7, 2013.  Just three days later (April 10, 2013) liver function tests showed improvement (AST 489, ALT 338, gamma-GT 476).  After nearly two months on 200mg/day of DHA-EE the values had come down even further (AST 454, ALT 125, gamma GT 188) presenting clear evidence of the impact of DHA-EE on Anthony’s cholestasis.  His doctors had commented that he was more alert and stronger.

Anthony’s father’s review paper:  A Review of Therapeutic Interventions and Treatment Attempts in Zellweger Spectrum Disorders

St. Gallen labs

Zurich labs