Tissue donation

One of the obstacles encountered in researching gliomatosis, besides its rareness, is the lack of tissue samples available for analysis.

Children have not had the chance to fight for their lives, their death is tragic, but our children can make sure that other children have this chance. And so, it is up to us as parents to make it happen.

Although it may not seem like the case, from our experience , Izas’s tissue donation will help us. Izas was always extremely generous, and we feel proud that she now belongs to medical research. A gift from her to others, the donation represents the hope that our children will one day survive this illness.

The request for an autopsy ought to be made by our childrens’ doctors, and they ought to know which families to ask. The trauma suffered by a family when their children receive the diagnosis is brutal, and there should be some sort of preparation for it, for example, advice from psychologists, psychiatrists, palliative unit…it is no easy question for the doctors to ask, but we believe that it is their obligation to suggest it and (above all), suggest it in the right way, without making the pain any worse.

Ask every question, don’t leave yourself in doubt (remember, there’s no such thing as a stupid question), and whichever decision you make, it will be the right one.

If the doctors have not suggested an autopsy but you are interested, speak to them, and if you are not satisfied with the reply, it may be that the hospital is not used to receiving this sort of request. If this is the case, contact us.

The tissue from the biopsy is also important, since it has yet to be subject to potential treatments and will provide invaluable information to researchers; if your doctors do not suggest it, make sure that you do.

Donating tissue is the only way we can expand our knowledge of the disease, advancing research in order to help other children.

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More information

Please contact us if you would like more information, either by sending us an email via the contact form or directly to informacion@izaslaprincesaguisante.org