World AIDS Day and Down syndrome; where is the cure?

One of my pet peeves was brought to mind by World AIDS Day. Not that I oppose finding a cure for HIV. I was a social worker when AIDS emerged in the eighties. I helped a young man with HIV who was kicked out of the loft in Greenwich Village which he had shared with his lover, and was now living miles from a payphone in the country where he slowly died of AIDS.  No one was with him.  He covered his mouth in my office, and treated himself as a pariah, asking me to touch the doorknobs for him, since no one knew how AIDS was transmitted. My heart broke with compassion for him, abandoned to die alone. There was very little I could do besides make him comfortable and keep him company in 1985. 

In a little over three decades, we discovered AIDS existed, raised money for research, and found treatments. Now its effectively cured, if only we would admit that it is spread by immoral sexual activity, we could have it under control. I am happy for those who are benefiting. Too bad that young man is not among them. 

In 1958 Dr Jerome Lejeune discovered trisomy 21, the cause of Down syndrome.  We should have rejoiced that a cure was now possible, and as with AIDS, banded together to raise funds. However, rather than joining him in his efforts to find a cure, which Dr Lejeune described as “taking less effort than sending a man to the moon” (which, by the way was done since T21 was discovered) the March of Dimes spent its millions developing a search-and-destroy methods of prenatal diagnosis, using Dr Lejeune’s discovery to find unborn babies with Down syndrome. This led to an abortion rate of 92% for such babies. Some cure. Dr Lejeune watched this happen and dedicated his life to finding a cure, he said, ‘I see only one way left to save them, and that is to cure them. The task is immense–but so is Hope.”

Did we kill AIDS patients as a means to a cure?  Or cancer patients?

Dr Lejeune said, “Medicine becomes mad science when it attacks the patient instead of fighting the disease. We must always be on the patient’s side, always.”

Why was pre-natal diagnosis and abortion for nearly 50 years considered the end of the Down syndrome story? Sure, its a complicated disease, but so is HIV. I have to think that AIDS patients being movie stars like Rock Hudson had a lot to do with the dedication and  speed with which we found a cure. There are 2.7 million afflicted with HIV in the USA and nearly half a million who have trisomy 21, or 20% of that number. That is still a significant population, yet there were no huge TV specials, no ribbon on the White House, or until recently, no big Hollywood celebrities sponsoring efforts to raise money for Down syndrome research. Instead, researchers like Dr Alberto Costa have to give of their own money to search for a cure for his daughter’s Down syndrome.

Like Dr Costa, I have a daughter with Down syndrome. She is no Hollywood celebrity, but don’t try to tell her that. Her smile and her can-do attitude brighten her elementary school.  I volunteer full time to raise awareness of the inequity with which people with trisomy 21 are treated. No, not in education, thanks to the Americans with Disabilities Act, she can go to typical school right through college. But in research and in the way it is considered standard medical practice that a woman expecting a child with Down syndrome gets no more than a phone number for an abortion clinic instead of information about how good life is for those with Down syndrome. Thanks to Dr Brian Skotko, whose new survey in the American Journal of Medical Genetics, brings out the fact that 99% of families are happy with their child with Down syndrome, and that the people with T21 are just as pleased with their liives. This is not what expectant women have been hearing. My friends have been told they were selfish for wanting to give birth to their child with Down syndrome, bringing misery upon themselves and their families. Its simply not true. And I am working through KIDS (Keep Infants with Down Syndrome) to change how the diagnosis is treated, especially since with the new diagnostic test, MaterniT21, the diagnosis will be offered more widely and earlier. Doctors will have results at 12 weeks instead of 22, giving women plenty of time to educate themselves about what life is really going to be like for their child with Down syndrome before making a decision to abort. 

I want people like Christina to find the compassion, resources,  and acceptance which is now offered to AIDS patients. Why shouldn’t she be treated with equal dignity?

Things are changing. Three years ago, the National Institute of Health formulated a research plan to find a cure for the cognitive delays of Down syndrome, and is now forming a consortium of parents and researchers. The legacy of Dr Lejeune lives on in newly formed Lejeune USA which had a major meeting at the Neuroscience Convention last month in DC (more about that meeting in future posts). UC San Diego Down syndrome researcher Dr William Mobley said, “if you told me a decade ago, I would be discussing clinical trials for a drug to treat Down syndrome cognitive delays, with four laboratories, I would not have believed it”. 

I was heartened by the star-studded fundraiser “Be Beautiful, Be Yourself” offered by the Linda Crnic Institute for Down Syndrome in Washington last month at $500 a plate. Gladys Knight was there and so was my Congressman. We don’t want people with Down syndrome to go away, but there is bright promise that within a decade, the significant delays in memory and learning which my daughter endures, may be, like AIDS, on the way to the dustbin of history.

Mondays with Elisabeth

Wow, it’s been a while since I last posted on our dear friend Elisabeth.  I pray that you are all getting to know her like we are within the Hannah’s Tears Ministry.  I have to let you know that yesterday, October 16, was Elisabeth Leseur’s 145th birthday, some of us were actually praying a 9 day novena to her as a gift. This novena was very special as it shed many graces upon those of us that participated.  If you are interested in the novena please click the novena prayer.  Were you also aware that it was the feast of Saint Gerard, patron of mothers?  I was not aware of his feast day until this morning and it gave me such a warm feeling in my heart to know that Elisabeth was born on his feast day, a woman that suffered the pains of infertility yet learned to use her suffering for the good of those in need of conversion.  I must ask, am I doing this?  Am I offering all that I can with my own sufferings to Our Lord?  Am I uniting my cross to His?  Or am I wasting my time choosing to be in pain and sorrow  because of what I don’t have in life? How am I choosing to live today?

Everything that we do in life is a choice, most especially what we do with the gift of suffering.  As I heard on EWTN Live today, it was one of Mother Angelica’s old shows from the 90’s, she said, “we must train the will (within ourselves) to offer and unite our suffering to Christ in union with HIS”.  Then and only then will we be on the journey that HE has called us to walk.  

Let us pray for one another that we may all learn to train our will to unite our all to Christ Jesus, no matter what the struggle/suffering.

Did you receive your Saint Gerard blessing yesterday?  If not make sure you ask your priest/pastor for a blessing this week.  God bless you all!

Some links that I would like to share with you today:

The Mothers’ Saint

Because of the miracles God worked through Gerard’s prayers with mothers, the mothers of Italy took Gerard to their hearts and made him their patron. At the process of his beatification one witness testified that he was known as “il santo dei felice parti“–the saint of happy childbirth. This devotion has become very popular in North America, both in the United States and Canada.

Thousands of mothers have felt the power of Saint Gerard through the League of Saint Gerard. Many hospitals dedicate their maternity wards to him and give medals and prayer leaflets of Saint Gerard to their patients. Thousands of children have been named after Saint Gerard by parents who are convinced that it was his intercession that helped them to have healthy children. Even girls are named after him, and it is interesting how “Gerard” takes form as Gerarda, Geralyn, Gerardine, Gerianne, and Gerardette.

Bible Study Idea:  

God bless you and have a week filled with GRACE & HOPE!

Mondays with Elisabeth

“What most people call “hope” is nothing but pleasant anticipation, which has as its reverse disappointment. It is here that the teaching of Christ again reveals its sublime and consoling features, more plainly perhaps than elsewhere. It is the great source of faith, and “no man cometh to the Father” but by Him, that is, Jesus Christ. Through charity, it gives us all our energy for good, and that peculiarly passionate love which is implied by the very word charity.”  ~ Elisabeth Leseur Servant of God

Mondays with Elisabeth

While reading Elisabeth’s journal you will find  a prayer that she wrote for the virtue of hope.  Something that we all need to hold on to in our daily lives, if you take time each day to truly see that God Our Father has truly given us many gifts to get us through our challenges each and every day, we just need to ask for them!

“Prayer to Ask of God the Virtue of Hope”

My God, who has allowed us human hope,
but who alone obtains Christian and 
supernatural hope, grant, I beseech You, by 
Your grace, this virtue to my soul, to the souls 
of all I love, and to all Christian souls.  Let it 
enlighten and transform our lives, our suffering, and 
even our death, and let it uphold in us, through
the disappointment and sadness of each day, an
inner strength and unalterable serenity.

~ Elisabeth Leseur ~ 

Finding the Peace YOU Need

This is a must read from Ma.rk Mal.lett’s blog site…

DO you long for peace? In my encounters with other Christians in the past few years, the most evident spiritual malady is that few are at peace. Almost as if there is a common belief growing among Catholics that a lack of peace and joy is simply part of the suffering and spiritual attacks upon the Body of Christ.” read more here

Every Blessing upon you all

Every stress and every worry must be given to Our Lord at the foot of the altar where Jesus becomes present, body, blood, soul and divinity. Our lives are not our own let us take one moment at a time and place our worries, hopes and prayers in the hands of Our Blessed Mother as she answers her “fiat” to God the Father let us humble ourselves and thank God for everything we have today.

Below the Poor Clare Colettines have a message for us all. God bless and keep you!

———- Forwarded message ———-
Poor Clare Colettines TMD

Dear Little hearts,

You are never forgotten in fact you and your families are daily in our hearts and prayers. It has not been possible to send out daily communications because of a limitation regarding the typing…I had to attend Gods medical Centre myself…. but this is to assure you of love and remembrance and prayer.

Could we all please look again into our hearts, into our daily offering of prayer and renew our dedication, or even begin to say the Angelus daily…..

I would be very interested to know what the common practise is in the area that you yourself live, as to whether it is prayed in the church, town or not….

Have a blessed Sunday, with love and joy….

The beautiful painting of the “Angelus” as painted by the French artist Jean-Francois Millet is well worthy of deep reflection and prayer

Pictures can yield as much understanding as the revealed word if we ponder, like Mary, all these things in our hearts…

The pictures is painted in such delicate tones, that we are as it were immediately brought into the atmosphere of the event it captures….the praying of the Angelus.. we are drawn into an experience of prayer.

It is dusk, the birds in the sky are flocked and flying home to their nesting place, the labour of the day is well on and drawing to a close, the Farmer and his wife have laboured long and hard, and are eager to return home which is yet a journey away as they are far out in the fields… it is harvest time.

In the far distance we see the church spire, the bell is ringing…. the bell not electronically generated, but made, cast and named to give glory to God, and often dedicated to Mary the Mother of God. The sweet tones of such bells could carry on the wind over great distances…..

The Angelus bell was rung and still is in many countries, and places three times a day, 6am-12 Noon and at 6pm. It calls each to lay aside their work in hand and to stop and pray, to lift their hearts and minds to God in gratitude through the intercession of Mary.

This is so beautifully captivated in this picture, God was supreme, all things had to bow before him, for man understood that all he had, possessed was for and from God… he was the source of the blessing of the harvest, the grace of labour, the gift of the day.

If you look closely you will see that the harvest was not an easy picking it was a potato crop, before the invention of harvesters, a back breaking job indeed.

There is something profoundly touching, inspiring and worthy of imitation in this picture.

The farmer and his wife worked a full and demanding day and yet they knew their priorities, it was never the case that there was no time for God…. time was dedicated to God…. the Angelus was as it were the ‘poor persons office…. it is a most beautiful prayer, simple and yet so meaningful.

Traditionally it is always accompanied when recited in public by the ringing of bells, but even for a private recitation the offering can be made even more solemn by ringing just three times a small bell.

Let us reflect deeply upon this picture it can speak to us so much of God…. and a call to love God above all things.