March Special Needs Focus (and Favorite Family Stories): Blood Conditions

March 8, 2017 Blood Conditions, Favorite Family Stories, hemophilia, ITP (idiopathic thrombocytopenia purpura), March 2017 Feature - Blood Conditions, PKU, thalassemia 0 Comments

The term special needs can sound scary. But it doesn’t have to stay that way. Our goal at NHBO is to equip and inform parents – replacing fear with knowledge – as they navigate the beginning stages of special needs adoption. And then encourage and support those home with their special needs kiddos.

We do much of this through our Family Stories. In addition to our regular content, each month (except January) we feature Family Stories focused on a specific group of Special Needs. Here are some links from previous years organized by category:

February: Heart – 2017 || 2016 || 2015
March: Blood Conditions – 2017 || 2016 || 2015
April: Central Nervous System – 2016 || 2015
May: Vascular – 2016 || 2015
June: Orthopedic – 2016 || 2015
July: Craniofacial – 2016 || 2015
August: Infectious – 2016 || 2015
September: Skin Conditions – 2016 || 2015
October: Developmental – 2016 || 2015
November: Urogenital – 2016 || 2015
December: Sensory – 2016 || 2015

Because March is Bleeding Disorders Awareness Month, it’s our Blood Conditions month here on NHBO. And all month long, we’ll be featuring family stories of children with hemophilia, thalassemia, phenylketonuria and other blood conditions.

Over the years, many family stories related to these special needs have been shared. And – during this month focusing on blood conditions – we wanted to take a moment to look back at just a few of our favorites.

Let’s go.


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After a twenty-minute speech about what our daily routine would entail, followed by a list of possible complications, the Hematologist looked at me pointedly… “You know, it will be a steep learning curve for you all, but you will settle into a routine, and more quickly than you think. You’ll see. He’s just a boy.”Faith (3-12-16)

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Hemophilia

Hemophilia: a rare bleeding disorder in which a person’s body does not make enough of one of the proteins (clotting factors) necessary for blood to clot effectively.

In this post from 2015, Kelly leads us through a comprehensive list of tons of information related to daily life and care for her son…a perfect read to get you acquainted with all the ins and outs of hemophilia.

The good news is that hemophilia can be treated, and these children can live long, healthy, active lives without joint damage. – Kelly (3-7-15)

Read more NHBO posts on this special need here.

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Idiopathic Thrombocytopenia

Idiopathic thrombocytopenia (ITP): a bleeding disorder where the blood doesn’t clot as it should, due to a low number of blood cell fragments called platelets or thrombocytes. Without enough platelets, bleeding can occur inside the body (internal bleeding) or underneath or from the skin (external bleeding).

In this post, Rae’s mom shares the story of their daughter who was adopted at 6 years old… informative about this condition and the joys of bringing their daughter home.



I cannot wait to see what God has in store for this little girl. To know of what she has lived through and seen prior to coming to the U.S., and to see her now is truly amazing. – Donna (10/20/12)

Read more NHBO posts on this special need here.

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Phenylketonuria

Phenylketonuria (PKU): a rare genetic metabolic disorder in which the body doesn’t properly break down the amino acid phenylalanine. PKU occurs in approximately 1 in 15,000 live births in the US and Asia.

Mom, Kristi – who herself was diagnosed with PKU as an infant – tells the story and gives information about adopting their two sons.



Would we change anything about our journey or family portrait? Not a chance! – Kristi (3-1-16)

Read more NHBO posts on this special need here.

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Thalassemia

Thalassemia: the name of a group of genetic blood disorders prevalent in Southern China which impact the production of healthy red blood cells.

Heidi, a mom to a daughter and a son both with Beta Thalassemia Major, takes us through an in-depth and informative post on all the ins and outs of waiting for your child with Thalassemia and then life at home with your precious new one. Perfect read for those parenting or considering this special need.



So what does daily life look like as a family of eight with two parents who work full time outside the home and two littles with thalassemia? I would say pretty much your typical crazy fun which comes with that dynamic with the occasional medical appointment and daily doses of medicine. – Heidi (3-8-16)

Read more NHBO posts on this special need here.

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If you are parenting a child from China with a special need and would like to share your story on No Hands But Ours, let us know. Just complete this short form and we’ll be in touch with you soon!



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The content found on the No Hands But Ours website is not approved, endorsed, curated or edited by medical professionals. Consult a doctor with expertise in the special needs of interest to you.