Disclaimer: Please be advised that everyone's experiences may be different and appropriate treatments may vary. Any medical information that you find on The Romberg's Connection website must NOT serve as a substitute for consultation with one's personal physicians. Our visitors should discuss any specific questions or concerns they may have about Rombergs with health care professionals who are familiar with the specifics of their special case.
As a support group, The Romberg's Connection is unable to offer medical advice to anyone. However, we are presently working on a listing of doctors with Rombergs experience.

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When Illness Knocks On Your Door

Flowers Flowers Flowers Flowers Flowers Flowers Flowers Flowers
Maria Chavarria Lujan Castellon
Written December 2003
February 17, 2005

We tend to forget that negative or unpleasant things can strike one of our family members. And if it concerns a daughter, the thought never occurs that something serious can happen to her. Fourteen years ago we had our daughter hospitalized in order to run tests to determine what disease was causing the deterioration of her body.

I could not comprehend that this was not a bad dream, it was happening to us, and was all too real; so real that her condition had worsened in a matter of days. The progression was too fast! It seemed her health declined as we went from one specialist to another. We did not know where to turn. With each doctor's visit, the problem seemed to grow larger. Though we were faced with this degenerative process, we did not stop seeking an answer. Seven months after the illness had begun we hear, for the first time, the name of that which has been afflicting our three year old daughter.

The diagnosis was scleroderma. We did not know what this meant, and upon arriving at our home and consulting a book on medicine, we discovered that this could be a fatal assault on our daughter, that she may have only several years to live. That night we understood that our little one could die. I will never forget that night. Inside I felt that no human being could endure this much sorrow, this much anguish, this much pain.

I wanted to pray to God, but I thought He would not hear me, after all, my daughter had not done anything and yet she could die. I would not allow it; I refused to believe my little one could leave forever.

A month after having her hospitalized in a clinic in Valencia we receive the results of a biopsy in which it was confirmed that she had a type of scleroderma which is called Parry Romberg. We knew then that her internal organs would not be affected. Her skin, connective tissue, muscles, and face would suffer deterioration. And though this would be extensive, my little one's life was no longer in danger. When I consulted the book on medicine once more, I found that there were various types of scleroderma; I had read the worse case scenario. Despite all of this, my husband and I always gave thanks to God.

Some time later we noticed a decline in her condition. The deterioration was progressing and when we faced the doctor's indecision regarding proper treatment our despair grew. That is when our search began. We knocked on many doors, and found all sorts of things. People with great charisma who wanted to help us, and others that took advantage of our situation, because wherever we were told to go, we went. Some would give us medication that did not help, we believe those efforts resulted in nothing so that our situation would seem graver still.

Two years after the beginning of our daughter's illness, during the month of May, we arrived at the Clinica Universitaria de Navarra [University Clinic of Navarra]. What should have been a joyous month; since our nine year old son was about to receive First Communion, resulted in a nine day hospitalization in the clinic where our little one underwent many types of tests to find a virus they thought was affecting her health.

When she was released from the hospital in Pamplona, there were four days until our son's Communion, which was celebrated with much pain and a sorrow that was evident in our faces. This happy occasion was clouded by the emotions that we could not hide no matter how hard we tried, the evidence is in the pictures we have. And our son was unaware of everything that was happening around him.

As my husband and I reflect we have commented many times, “You can not give what you do not have!” We have had moments of great sadness and desperation as we watch our child's body become deformed while we stand by and can do nothing. To watch her lose muscle mass and have a great sense of impotency – not even the doctors can do anything. We could only wait to see if medications would help.

I tried to pray but I could not. I thought that God did not want to hear from us, and then I would come to my senses and ask, “Why?” There is no why. This happens to you and that is it.

I thought that we should have a light hearted attitude so that we could endure the best we could. We tried listening to positive people who would transmit their happiness to us; we read books that would elevate our morale, which was very low… At times this would work for me as I had communicated with many people, due to my outgoing personality, and it would help me. I thought that if I was unhappy that is what others would receive from me, and if I was happy, then they would receive happiness.

Fourteen years have gone by. Our struggles with doctor's visits, tests, rehabilitation, swimming, and innumerable trials and circumstances continue. All that is left is to wait and see if a cure is found, and that she may have surgery. Medicine is advancing rapidly and some day, not too long from now, we hope she may have microsurgery and be a little girl like all the rest.

That we may be happy…like the day she was born. I was so happy! Some day I wish to remember this all as a bad dream and we will think that nothing happened. I want it to be that way; it is what gives me the strength to go on. I refuse to believe that her condition will worsen, and I feel she will get better.

We need only one thing to be happy, something we do not appreciate when we have it, not until you have lost it: “Health”.

Published in the magazine “Papeles de FEDER” No. 6 of the Spanish Federation of Rare Diseases (2004)

Feel free to leave a message for Elena at rombergs@hotmail.com


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All photos and text are the property of the families represented, and may not be used without their consent.