Hunsley's Fight

People have been asking what they can do, where they can donate, so we have prayed and prayed and decided to open a GOFUNDME for Hunsley.  Not many people know, but along with all the kidney issues, Hunsley has been diagnosed with several congenital defects.  To us..... she is one SPECIAL girl!  Hunsley was born with what we thought a "trigger thumb" on her right hand.  After we stabilized her hips from having bilateral hip dysplasia surgery, Dr. Sims sent us to Scottish Rites to be further evaluated.  We got a diagnosis of bilateral radial longitudinal defiecency.  It is a defect where Hunsley's radius in her arms, the muscles, and tendons in her arms/hands did not develop in utero.  We only thought her right thumb was effected, but it has affected both.  We have noticed that she holds things between her first and second fingers.  Her hands and arms are continuing to be drawn up, but we cannot operate to fix the problem until she is 4 or 5.   Unfortunately, there are a lot more things that go along with this diagnosis.  One being a defect in her kidney's, which we are aware, another being thrombocytopenia (low platelets) which we have been battling, and another that we didn't believe she had was fanconi anemia.  She was tested for this at Scottish Rites, and we were told she had a slim chance of having.  While we were in the hospital last month for 12 days, we received the devastating call that Hunsley's test for Fanconi Anemia has come back positive and we will be sent to Texas Children's in Dallas.  Fanconi Anemia is a rare inherited blood disorder that leads to bone marrow failure.  We were devastated with this news, but after much research, the puzzle pieces FINALLY go together.   Her kidney's continue to struggle and we will undergo surgery in Amarillo on September 26th and be in the hospital for a week.  We will also go this week to Texas Children's to get established with a hematologist/oncologist.  Everyone has wanted us to open up a page, and for the longest time, we decided against it.  But now that we have all the diagnosis and forsee upcoming procedures and possible bone marrow transplant, we decided to set it up.  Most of all, we need prayers.  Prayers that this disease will not take her from us.  We look at all the horror stories and statistics of life expectancy only being until mid 20's and we KNOW GOD is the ultimate physician and He will heal our little Hunsley.  Thank you to everyone for your prayers, calls, visits, texts, and love.  We love you all and we will keep everyone updated!