US Mother Raises Awareness on Harlequin Ichthyosis

Clorox

Boy with harlequin ichthyosis has to have his skin scrubbed with bleach.

A US mother has taken upon herself to educate people on harlequin ichthyosis, a rare and potentially fatal syndrome that affects unborn children. Mother of two, the mother spends most of her time caring for Jamieson, the youngest member of the family, who was diagnosed with this terrible condition.

Mother Says She Needs to Give Her Son with Harlequin Ichthyosis Morphine Before Bath Time

Meet Alicia Barber, a 27-year-old hero mom from the United States. Mrs. Barber said during a recent TV interview that her youngest son, Jamieson, has utterly changed her life.

When Barber was 7-months pregnant, her OB-GYN doctor told the woman that her son had harlequin ichthyosis, a terrible and rare genetic malady. Barber recalls how her doctor advised her to abort the baby.

However, feeling that there’s more to her future child than his disease, the woman decided to have the child. Barber said that the doctor told her that children born with harlequin ichthyosis have two percent chances of living.

And it appears that Mrs. Barber made the right call, considering that everyone advised her against keeping Jamieson.

Alicia told the reporter that life with Jamieson is hard but filled with countless rewards. To be able to raise her child, the US mother has had to wrestle with people’s prejudice and to respect the doctors’ indications to the later.

The woman admitted that the worst aspect of caring for Jamieson is bathing him. Due to his condition, Jamieson’s skin is scale-like, making him prone to infections.

Conclusion

To be able to bathe Jamieson, Barber must first scrub the bathtub a couple of times to remove all the sources of infections. After that, she thoroughly scrubs Jamieson’s skin with Clorox bleach for 15 minutes to exfoliate the hardened skin.

Barber said that the process causes so much pain to her son that she needs to give him morphine before the bath.

Image source: Flickr


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