Their skin is fragile and very sensitive, a touch, even a kiss would be enough to break it. Like the wings of a butterfly. This is what happens to children with Epidermolysis bullosa EB, a constellation of rare genetic diseases that cause such a pronounced thinning of the skin that any contact is dangerous: if touched, the skin becomes red, blistered and often breaks. It is precisely this fragile condition that gives them their name, "butterfly children".
The Holy Family, Pro Terra Sancta and the "Help for the Butterfly Children" project
In Gaza, in the situation of poverty, economic and social instability and civil unrest in the Arab-Palestinian enclave, no one takes care of them. No one except the Catholic parish in Gaza City, the only one in the city centre, dedicated to the Holy Family. Vincenzo Bellomo, Pro Terra Sancta's contact person in the Palestinian area, has set up a care project in the parish centre for these children. The name of the initiative is precisely "Help for the butterfly children".
In the mystery of Christmas, the Holy Family has welcomed a fragility that has become immense wealth. In the same way, in the parish named after the Holy Family, this Christmas Pro Terra Sancta is taking on the fragility of the "butterfly children", so that their lives may be a testimony of beauty and an opportunity to encounter a grace prepared for them.
Fragile from birth
It is a painful condition, that of these little ones: fragile, very fragile, in need of everything, they cannot even be welcomed in an embrace, because of the risk that this might harm them. It is a condition for which even medicine is struggling to find solutions today. At most, 'recommendations' are made for its treatment, rarely pharmacological therapies. In fact, as a group of researchers pointed out in a fairly recent study published in a scientific journal,”there is still no cure for EB. It is an illness that one has to live with and that is difficult to overcome”.
Girls and boys with EB are already born with a severe condition. Their tortured skin exposes them to the risk of painful ulcers from the very first moments of life, and a strict protocol must be observed even when carrying out the most banal activities: washing, dressing, feeding....
The disease is rare, of course: in Gaza, out of an estimated population of more than two million inhabitants, only 70 cases of epidermolysis bullosa are reported. And, perhaps because of this, it is largely ignored by institutions. But not by Pro Terra Sancta, which monitors 38 of them as part of its "Helping Butterfly Children" project.
The Pro Terra Sancta project
Vincenzo says that within the project it is a man suffering from epidermolysis bullosa who takes care of the children. Ishaq, this is his name, visits the children affected by the disease every day, helps them with the bandages, he does the dressings necessary to relieve the pain of the excoriations and ulcers that every breath can cause. Ishaq is attentive, expert; he has experienced first-hand the same condition of fragility experienced by the beneficiaries of the project. He is one of the few people in Gaza who knows how to treat this syndrome.
His caring gestures are precious for these little ones: Vincenzo said that even hospitals are unable to manage cases of epidermolysis bullosa, especially in children. A few years ago, a baby girl with this disease was born in a hospital in Gaza City, and the doctors had to call Ishaq to the hospital to manage the emergency.
At Christmas, for the butterfly children
This is why "Help for the Butterfly Children" is relevant for Gaza, and all the more so now that Christmas is approaching: in the feast of humility, when it is the last and the poor who are at the centre of God's revelation to mankind, it is particularly important that these last of the last, in Gaza, receive the care and attention they so desperately need.
In this Christmas, which still forces us to rediscover that we are fragile, do not forget these children, fragile as butterflies, like butterflies living only in the narrow circle of a very brief light. That light that you too can keep lit by helping Pro Terra Sancta in its Gaza project.
