The photos on this page were taken in June of 2007 - one month before Luca lost his battle.... Above is Luca with his dad, Dennis...

Patient Name: Luca Zieren

Nickname - El Guapo

Age: 4 years and 7 months.

Born: October 23, 2002

Diagnosis: Both Lymphangiomatosis & Gorham's Disease

Location: Den Haag, Netherlands (Holland)

Luca with his mom, Mandy (above)

Luca with his mom, Mandy... his brother, Tony... and his sister, Quinty... (above)

Above Luca is sleeping in his hospital bed...

Date Last Modified: August 12, 2007

About Luca and his family - including immediate family and close friends.

Luca was a very loved little boy. For someone who lived such a short life - he gave a lot of love and happy memories to those he left behind.

Luca's dad, Dennis Zieren had an endearing nickname for him - El Guapo... The Handsome One in Spanish. As you can see from his photos - he surely was.

He leaves behind his dad - Dennis Zieren... his Mother - Mandy Emmel... a 9 year old brother - Tony... and a sister - 7 year old Quinty.

During his hospitalization, he bonded with 3 nurses... Margriet, Liesbeth, and Therza. They were "very sweet for him" - his dad says.

Luca's surgeons were Doctors Kees van der Ven, Kim Horsenal, and Saskia. He had a very special bond with them and throughout his journey with this dreadful disease, Luca trusted all of them unconditionally...

Special Personal Information about Luca:

Luca was too young to form any hobbies - but his greatest pleasures in life were playing on the playground and having a lot of fun with all who touched his life.

The Biggest Challenges and Problems Luca, His Family, and Doctors Faced During Luca's Brief Battle With LYMF and Gorham's Disease...

Dad, Dennis says that the greatest problem they faced was that Luca had a very high pain level. Despite the pain, he was almost always a cheerful boy. He knew the doctors were trying to help him when they subjected him to uncomfortable tests. This process brought his spirits down and made him sad at times.

After his first lung operation he was on the respirator for more than 4 weeks. Also x-rays did not appear to give a good overall view of what was causing his greatest problems. The first MRI scan did show the problems that were not able to be seen by standard x-rays..

Dennis advises anyone else going through this diagnosis not to rely on the x-rays - but to insist upon the MRI scan.

Dennis and Mandy decided not to have Luca receive Interferon Alpha B-2, and radiotherapy. Dennis says that this decision was very difficult because as parents they wanted to do anything that would save their precious child. They read as much information and also spoke with two other families who had tried this with their children and decided that it was best to withhold these treatments.

He and Mandy decided that Luca's quality of life was so much more important - and as they look back they feel they made the best decision. The other 2 children they knew of had these treatements and did not survive.

Dennis feels this should not be an option "when the Lymf problem occurs in the chest, and around the lung tissue". He believes if the diagnosis is provided early - in retrospect that surgery to remove the lymphangioma and directly glue the pleura to the chest wall. Although this is a serious operation - from his experience with Luca he believes this will provide a better quality of life.

From what he has learned from his experience - he believes that since the lymf vessels are out of control - there is no current cure. He feels at this time that trying this surgery - it will "buy" more time for research to find a cure.

Dennis believes that the torture the child goes through with chemo and/or radiation therapy means that "what they have to go through is even more terrible than making the lung operation and rehabilitation time".

Dennis' understanding is that children given this diagnosis have only 2 years to live as "the lymf fluids that are leaking out of their vessel system weakens the body and organs". At this time he believes that the only thing that we can do is to " fight against the symptoms".

The doctors tried Octeotride to reduce the fluid and felt that it may have helped to a degre. It just did not help enough. He states that for "Luca’s case they tripled the doses and still his drain was running 10 litres per 24 hours. After many weeks it reduced to 2 litres per 24 hours. Still to much"

Other Issues Luca Faced:

In addition to the LYMF/Gorhams diagnoses, Luca also suffered from pulmonary emboli, heart and respiratory problems, and collapse of blood vessels due to the damage by the leaking lymph fluids.

He also had issues with blood loss which made the problems even more difficult to manage by medical means. Blood transfusions did help with this which helped strengthen Luca for a short period of time - but clearly helped improve his quality of life.

The age he was diagnosed:

Luca was diagnosed on the 30th January 2006, age Three years...

Other information Dennis would like to offer:

When your children are affected by this terrible killer, fight for your kids, don’t always listen to the doctors, first try to search and read as much as you can about this disease, and be prepared for all meetings that you have with the doctors.Not that they are incapable but making terrible decisions, and lose the quality off life.

Use the time with each other and in goods days try to go out and do nice things such as a walk through the park, going to the zoo, or beach. And make lots off photographs and films.

We had in this 1.5 year time many situations that the doctors said well this is it, but Luca fought back and after three days he was sitting in his bed making fun and yokes.

I decided, not to say goodbye, I said I will do this when the time is there. Until then I am going to do everything in my power as a parent to give support, love and make the days as they come. Also still reading about new findings, but until today still nothing new found to help find a cure.