History
“Pasitos de Luz” is a story
born from love…in order to give love
My name is Yolanda, I’m the third of twelve children in the Sanchez Santiago family.
We were a poor family. I used to help my mother take care of my brothers and sisters My father worked to provide the upkeep for all 14 of us in my family.
My mother dedicated her whole life in taking care of all 14 of us and in ensuring we could make ends meet.
None of us was able to attend a full education, and as my father worked in a job based on commission only, he did not have any regular salary or employment benefits such as medical insurance for either himself or for us.
I do not remember ever visiting a hospital or a doctor until after I was married. We did not know what the inside of a hospital looked like. At the age of 10, I decided to go out to work and got casual work with the neighbours, taking care of their children, washing dishes, cleaning or running errands, to earn some money and to be able to support my family.
This was common for all of us in the family. Typically, after finishing an apprenticeship or high school, myself and the older children would have to put our studies to one side in order to start working to provide for the family. We would not be able to study until we were able to afford to stop working.
In 1994 everything changed for us. My sister Astrid Elizabeth, aged 19, fell ill during high school around the time of her final exams, round about the time when she was helping to organize the school prom that would take place in a month’s time.
Astrid was a good daughter and wonderful sister, as well as being beautiful and intelligent. She was very mature for her age. She tried to eat healthily and to exercise. She also enjoyed singing and acting, and had a lot of friends who shared her interests.
After she fell ill, she visited a total of 14 doctors, but not one was able to accurately diagnose her condition. They prescribed medication which had no effect and her condition continued to deteriorate.
She lost a great deal of weight, could not eat, and could only take liquids through a straw which she could only just manage to do because her mouth was covered in sores and was very painful. Even drinking water was difficult for her. She could not sleep well either and got more and more depressed as her illness continued unabated stopping from, amongst other things, attending her graduation.
My mother and I took her to Mexico City and again a doctor incorrectly diagnosed her condition. Then we took her to an excellent hospital, and it was there where I found Dr. Hoyo, a Japanese doctor who analyzed my sister’s mouth and was able to assess her symptoms. She performed a biopsy and the diagnosis Was: “Penfigo Vulgar” (a dermatological condition). She was the fifth case in all of Mexico, so it was still a relatively unknown condition in the medical world.
Once my sister was back at home, we all had to learn to deal with her illness. It was very difficult, especially for a young lady who had suddenly lost so much: her fiancé, her beauty and her strength, both mental and physical.
At this point she weighed only 70lbs. She had gone from being a happy, optimistic person, with a love of life, to very depressed, in part due to the side effects of tranquilizers, and also due to seeing in herself how much her face and body had changed during her illness. At that time she was being treated with 200mg of cortisone per day This led her to attempt suicide by taking a bottle of 200 tablets. The doctors were able to save her, but she tried a second time and third time, but on all occasions she was resuscitated.
I used to think that I wanted to be able to teach my sister the lessons in life, but I ended up learning from her. I found that in taking care of a chronically ill person, facing with all the issues that this entails, that she had in fact taught me to be prepared for the worst.
By now, I knew all about the pain, the emergencies, the going back and forth in an ambulance. I knew all the hospitals. I also knew the feelings of desperation and powerlessness, knowing that we lacked resources, and medical knowledge, and the anguish that is felt when someone close to you wants to take their own life. I know that anyone who has had a friend or relative with a serious illness, whether it be physical or mental will be able to relate to that.
All the family went through very difficult times, when we were trying anything and everything to help our sister. We held faith in new medicines, but as the days passed and desperation took hold, we came to realize that all those medications had no effect. Her illness spread to her lungs which meant that every two days she had to be treated with a supply of oxygen.
Then, in January 97 , my sister Astrid Elizabeth read a book called “I have seen the Light”. When she finished she simply said: “I am ready, I accept my illness with peace and I put myself in the hands of God”.
One night, December 31st 1996 I spoke to the doctor and he said: “Nothing can be done”. I did not want to accept it, she was so young with her whole life ahead of her…
Astrid Elizabeth died of respiratory collapse on May 23rd, 1997, on our mother’s birthday.
I learned that when you are standing strong, you can do something for the others and we should make the most of the short time that we spend here on this earth, as everything that we buy or own is only ours temporarily.
I have now learned that in the face of adversity we should never give up, never allow our self to be swept away in the suffering, and never ask for it to be over.
Her absence has changed me; she has taught me how to help. I felt that I had to do something and it would be for someone in the depths of desperation, someone that has had to fight for years, like parents with a handicapped child. They live through one emergency or crisis after another, and need someone that they can lean on for support. After becoming a volunteer, I realized I could help these families even more. I found that my vocation in life was to be dedicated to children with disabilities.
On December 2nd, 1999 I joined a group of 8 mothers of children with different disabilities. We began to work together with their children, with the assistance of specialized therapists in just one room of one house.
When in a family such as this, and the odds appear to be stacked against you; there should always be a “Light” somewhere along the way which should help to guide you and lighten the load.
That is how “Pasitos de Luz” came into being
It was founded with all the enthusiasm and the love that I feel for the children and in particular by supporting the mothers. We came to exist as a group out of the great need that mothers have. It gives them the chance to be able to work and bring some money home, because on their own they were not always able to look after the demands and needs of their children and also make a living.
We started with virtually nothing; we only had two boards to help children stand up, a baby– walker and 2 cots, a few dishes and an excellent physiotherapist who taught us a great deal.
We rented a place as a base for the charity, then another, finally moving to a half-built house that was lent to us, owned by my husband. Slowly but surely, we were able to adapt it to children’s needs. This house is where we are now currently based, in Puerto Vallarta, in the state of Jalisco, Mexico.
We had been in operation for just a few months, when we were advertised by the city president to go to a public notary to register officially as a charity; and that is how: “United Mothers for the Rehabilitation of their children AC.” Came to be officially recognized as a charity on November 22nd, 2000.
We have continued to grow since those humble beginnings as a group of eight mothers, and we now offer more services than ever before. Not only for the handicapped child, but also for their mothers and fathers, brothers and sisters of the disabled child.
Do you want to join us to help these children and families?
There is still so much to do!
Jesus and Our Lord Father will be thankul!
