A Christian reflection on illness, what’s an orphan disease? (UBTF mutation disease)

I recently met a woman with a daughter who has a rare genetic disease that affects about 20 people worldwide. With great dedication and courage the mother has set up a foundation to fund research for this disease (which is called “UBTF mutation”), since the big pharmaceutical companies are not interested in investing in a disease that affects so few people.
I proposed to celebrate a Mass for the girl and the people affected by this disease at the Holy Sepulchre in Jerusalem and made a video to ask for prayers and offerings that, whoever wishes, can donate here:

https://almy-foundation.org/donations/

The foundation promotes research for the identification of a therapy, which is carried out by some of the most important laboratories in the world, among those the Weizmann Institute in Israel and the Jackson laboratory in the United States. This foundation has no collateral costs or salaries of employees to pay, since the secretariat is managed by the girl’s mother and the money – which by statute can not be used for personal needs- go directly to fund the various research projects coordinated by the foundation, that’s to say by the girl’s mother who is in direct contact with researchers for the experiments currently underway. The results of the research and the aims of the foundation can be found in detail in the website link above.
There remain unrealized projects, such as funding a researcher to study the disease as his main interest.
As in many fields of research, any progress in the treatment of this disease may also benefit other diseases and also provide a model of possible research for those diseases that are sadly defined as “orphan” or abandoned by the research, because of the poor economic interests at stake.

I conclude this appeal with a Christian reflection on illness. What is more Christian and universal than suffering? In fact, we are disciples of a crucified God and Christians immediately chose as their symbol the wood of the Cross and not the empty tomb of the Resurrection, precisely because in Jesus’ voluntary suffering God’s greater love for us is demonstrated. We are all ready to rise and rejoice, but not to die to save another, even an enemy. What is more pleasing to God than to devote one’s time and energy to lifting up those who suffer?
Jesus taught us, “No one has greater love than this: to lay down one’s life for one’s friends” John 15.

Health is a gift from God and He is so saddened by human suffering that He commanded in the Gospel to visit the sick and pray for their healing, doing what we can to alleviate their suffering.
There are examples in both the Old and New Testaments of diseases as plagues and divine punishments.
Reading the entire biblical message, however, invites us to approach such a complex theme with prudence. God’s original gift to man is health, and “God did not make death, and he does not delight in the death of the living. For he created all things so that they might exist; the creatures of the world are wholesome, and there is no destructive poison in them, and the dominion of Hades is not on earth”, Book of Wisdom 1.

Reading Scripture in its entirety, one understands that God does not directly inflict disease, rather He grudgingly tolerates it in view of a greater good, allowing ” Secondary causes” to run their course, knowing that one day we will be free of them and evil, in all its forms, will be permanently defeated. “Secondary causes” is a philosophical expression to indicate all those or those things that are responsible and executors of evil in the world, but that cannot escape the power and universal Providence of the “First cause” which is God, who always and only works good and has the ability to turn even evil into good. According to biblical revelation, sickness, death and pain did not enter the world by God’s doing, but because of original sin and transgression suggested by the enemy. They will not be the last word, but only a temporary evil, tolerated in view of an immensely greater good.

Jesus in the Gospel also made it clear that it is wrong to consider illness a direct consequence or punishment of our personal sins, it is much better to leave this judgment in abeyance, understanding that illness is a great mystery, which we do not have the means to fully decipher.
“As he walked along, he saw a man blind from birth. His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?” Jesus answered, “Neither this man nor his parents sinned; he was born blind so that God’s works might be revealed in him” John 9.
The disease-punishment equation is imprudent. There is a greater mystery before which we must bow and which will lead to the manifestation of God’s glory.

In which way? In a thousand ways that we do not fully understand, but to give a few examples:
Through the love and faith and humility that the sick person lives in his or her own painful condition, and that people close to the sick can exercise more. Through the offering of suffering which, united with that of Jesus on the Cross and humbly accepted, is not wasted, but represents an act of love that can contribute to our salvation and that of others. Through the definitive liberation from evil that will be realized in the final Resurrection.
It is right to hope for physical healing and to ask for it with confidence. But the hope of the Resurrection and eternal joy is what gives courage when we are placed before situations that seem inescapable, as St. Paul says:
“So we do not lose heart. Even though our outer nature is wasting away, our inner nature is being renewed day by day. For this slight momentary affliction is preparing us for an eternal weight of glory beyond all measure, because we look not at what can be seen but at what cannot be seen; for what can be seen is temporary, but what cannot be seen is eternal”. 2Corinthians 4

The current affliction for him even seems “slight” compared to the immense amount of glory that awaits us. To us, however, it does not seem slight at all, but it is a discourse that can give hope. Just like the observation that even if the body is in decay, the soul is renewed and grows without end.
Youth is considered beautiful, and it certainly is. But old age should also be praised and brings with it many blessings. A body that is now resigned and less eye-catching makes the soul and the dimension of interiority stand out more. The person is wiser, more humble and can finally look at things with a depth and experience that was not there in previous ages. The love for God and for others is purer.

Finally, the answers provided by faith help, but sometimes they seem not to be totally satisfying when we are confronted with human suffering. The storm remains a storm and it is easy to comment on it and give advice if we observe it from afar, much less easy if we are its victims and struggle to survive and not loose hope.
The best thing we can do is pray for the sick, visit them, help them and make their suffering lighter.

Helping people who suffer is in fact one of the main commandments that Jesus left us. Just like he did, not only asking, but setting the perfect example for us in everything. Although he was innocent he was crucified for us and shared our suffering, he did not give us grand speeches about suffering, but in the reality of the cross he showed his solidarity with those who suffer and suffer injustice. He continues his passion in us, who are his members, suffering with us and in us, and he helps us to carry our burden, even when it seems unbearable.

He certainly wants us to see him not as the one responsible for our evils, but as the one who is really the sole author of all our good things, the one who creates good things, the one who defends us and is on our side, the one who is close to us, consoles, heals, gives hope and strengthens us, having already prepared a place for us in his Heaven, where there will be no more tears or death.

Please note: this is not a sponsored advertising. I am not member of the ALMY foundation and this is my personal gratuitous initiative to support them with prayer (the most powerful of all means) and to help them to raise awareness and funds. I saw the seriousness of the foundation’s research and goals and thought I’d do something to help. 

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