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Ohio sisters diagnosed with rare disease, in need of bone marrow transplant

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Credit: Be the Match

TOLEDO, Ohio — The odds of one child being diagnosed with a rare disease is very low, let alone two children with the same rare disease.

But this is the reality for local family the Langenhops, whose two daughters Ava, 3 1/2 and Olivia, 2, are both fighting for their lives against Leukocyte adhesion deficiency type 1, or LAD1.

Credit: Be The Match

LAD1 is a disorder that causes the immune system to malfunction, resulting in a form of immunodeficiency, according to the U.S. National Library of Medicine.

Immunodeficiencies are conditions in which the immune system is not able to protect the body effectively from foreign invaders such as viruses, bacteria, and fungi.

LAD1 causes white blood cells to not working properly and do not reach the site of infection like they should.

The family first discovered something wasn't right when Ava's limbs would swell each time she would get a scratch or a cut. Her dentist also noticed the beginning stages of periodontal disease, another indicator of LAD1.

Ava was first diagnosed with LAD1 at Cincinnati Children's Hospital, with Olivia being diagnosed shortly after.

After receiving the news about their daughters, parents Jon and Alicia found out they are both carries of the recessive trait for LAD1, which means any child they have has a 25% chance of having the disease.

Not only that, Alicia is expecting the couple's third child, a boy, in October.

Credit: GoFundMe

The National Library of Medicine says starting from birth, those suffering from LAD1 develop serious bacterial and fungal infections, and their life expectancy is often severely shortened.

The cure of Ava and Olivia from this deficiency is a bone marrow transplant. Both girls have been placed on the list in search of a donor, and are on preventative prophylactic medications in the meantime.

There is a 50% chance that their new baby brother could be a donor match for his sisters, but there is also a 25% chance he could have LAD1.

If the two are able to find a donor, the transplant won't be the end of their journey.

Ava and Olivia will then need chemotherapy to wipe out the existing immune system, followed by an extensive inpatient stay for the transplant, which will be performed in Cincinnati.

After discharge, Ava and Olivia will need to stay within 30 miles of Cincinnati for up to six months for follow-up blood work and therapy several times a week, according to their Go Fund Me account.

Donate to their Go Fund Me here

The family says it will then take two years for their new immune systems to develop, so they will not be able to start school for several years. None of this can begin until the girls find a donor match.

'The emotional magnitude of this condition and the financial burden is all very overwhelming for the family and not only affecting one but both of these precious little girls.  Every prayer, every kind word, and every penny are appreciated.  Please find it in your heart to help Jon and Alicia as they navigate this extremely difficult path they have been given," says the Go Fund Me account set up for the girls.

You can also help the family by becoming a donor and seeing if you are a match for Ava or Olivia.

Anyone interested in joining the National Bone Marrow Donation Registry can text AvaAndLiv to 61474 or head over to the Be The Match website to learn more.

Using this link and text code, the Langenhop family can track how many people sign up to be donors for their daughters.

Be The Match operates the largest and most diverse bone marrow registry in the world. All it takes is a cheek swab to see if you could be match for a patient in need, like Ava or Olivia.