Fund for Baby Milana's Medication
Donation protected
Hello. Thank you for visiting Milana’s page. My name is Jessica, and I am Milana’s aunt.
Milana is six months old and she is battling an extremely rare, life-threatening disease called Atypical Hemolytic Uremic Syndrome (aHUS). There is no cure for aHUS, but children who are diagnosed with the disease usually respond well to supportive treatment. Along with multiple blood transfusions and close medical attention, Milana will receive the only known treatment for aHUS, Soliris, which is also referred to as the most expensive prescription drug in the world. Our family is elated that there is an option for treatment, and we remain hopeful for Milana’s health.
Please join me in supporting Milana, her older sister, Sofia, and her parents Trevor and Anya, as they face the unimaginable. Your prayers, positive thoughts, good vibes, love, and encouragement will help them in this time of need.
Milana fell ill over the Fourth of July, as our families gathered together to celebrate the holiday. She ran a fever, was lethargic, and jaundiced. Over the next few days her symptoms escalated, and doctors admitted her to the hospital. Initial tests revealed that her red blood cell (RBC) count was low, and over the next few days it continued to drop. She received a blood transfusion to stabilize her condition as the doctors searched for a cause. Frightening diseases were ruled out one-by-one, which left us relieved, yet concerned. Within the week, her condition deteriorated again. We learned that Milana was producing enough RBCs, but her body was breaking and/or destroying them. Her body required another transfusion. The influx of RBCs greatly improved her overall health and behavior and by the following day Milana was once again the perky, giggling baby girl we all love so much.
Testing continued and doctors tentatively diagnosed Milana with aHUS. The only treatment for aHUS is a prescription drug, Soliris. However, the drug is not a cure and if successful, it must be taken on an ongoing basis. Soliris costs more than $500,000 a year.
Because Milana is so young, just six months, there is not an established dosage for the medication and administration has been slow. She required a third blood transfusion right around the time she received her first dose of Soliris, on July 27.
Today, July 31, we received good news. The medication appears to be helping. Milana’s RBC count has remained stable for three days. Her team of doctors will continue to monitor her progress, and she is scheduled for another dose in the upcoming week. Milana will remain under the Cancer and Blood Disorder Team’s care at Children’s Healthcare of Atlanta.
Please pray for my niece and her family.
We are humbled by your support of our family. All proceeds from this page will directly benefit Milana's medical expenses.
Thank you again for your interest in Milana’s page. For more information on aHUS and treatment options, please visit: Information on aHUS or Information on Soliris.
Milana is six months old and she is battling an extremely rare, life-threatening disease called Atypical Hemolytic Uremic Syndrome (aHUS). There is no cure for aHUS, but children who are diagnosed with the disease usually respond well to supportive treatment. Along with multiple blood transfusions and close medical attention, Milana will receive the only known treatment for aHUS, Soliris, which is also referred to as the most expensive prescription drug in the world. Our family is elated that there is an option for treatment, and we remain hopeful for Milana’s health.
Please join me in supporting Milana, her older sister, Sofia, and her parents Trevor and Anya, as they face the unimaginable. Your prayers, positive thoughts, good vibes, love, and encouragement will help them in this time of need.
Milana fell ill over the Fourth of July, as our families gathered together to celebrate the holiday. She ran a fever, was lethargic, and jaundiced. Over the next few days her symptoms escalated, and doctors admitted her to the hospital. Initial tests revealed that her red blood cell (RBC) count was low, and over the next few days it continued to drop. She received a blood transfusion to stabilize her condition as the doctors searched for a cause. Frightening diseases were ruled out one-by-one, which left us relieved, yet concerned. Within the week, her condition deteriorated again. We learned that Milana was producing enough RBCs, but her body was breaking and/or destroying them. Her body required another transfusion. The influx of RBCs greatly improved her overall health and behavior and by the following day Milana was once again the perky, giggling baby girl we all love so much.
Testing continued and doctors tentatively diagnosed Milana with aHUS. The only treatment for aHUS is a prescription drug, Soliris. However, the drug is not a cure and if successful, it must be taken on an ongoing basis. Soliris costs more than $500,000 a year.
Because Milana is so young, just six months, there is not an established dosage for the medication and administration has been slow. She required a third blood transfusion right around the time she received her first dose of Soliris, on July 27.
Today, July 31, we received good news. The medication appears to be helping. Milana’s RBC count has remained stable for three days. Her team of doctors will continue to monitor her progress, and she is scheduled for another dose in the upcoming week. Milana will remain under the Cancer and Blood Disorder Team’s care at Children’s Healthcare of Atlanta.
Please pray for my niece and her family.
We are humbled by your support of our family. All proceeds from this page will directly benefit Milana's medical expenses.
Thank you again for your interest in Milana’s page. For more information on aHUS and treatment options, please visit: Information on aHUS or Information on Soliris.
Organizer and beneficiary
Jessica Leitheiser
Organizer
Navarre, FL
Trevor Spring
Beneficiary