Tara Mae's Incurable FIGHT against Hurlers!!!
Donation protected
Tara Mae Hardy is the 18 month old daughter of Sarah Clark and Triston Hardy. On June 6, 2019 Tara was diagnosed with congenital spinal kyphosis. After being diagnosed with that Drs wanted her to see a genetics specialist, they knew something else was wrong by her features and her milestone progress but they weren't quite sure what!!! She went to the genetic Drs at Emory University in Atlanta, Ga. Test were done where they further diagnosed her with MPS disease Type I -Hurlers Syndrome on September 17, 2019. Sarah, Triston and all of the family was devastated!!!!! On September 23, 2019 she was admitted to Egleston childrens hospital where she had all of the following procedures done THAT DAY: tonsillectomy, adnoidectomy, tubes in both ears, a G tube placed and a central line placed. Five procedures done in one day!!! Tara Mae also had a shunt placed in her brain due to hydrocephalus. 
On October 4, 2019 Tara had to have ANOTHER procedure on the central line because only a single lumen was placed and it should have been a double. Surgeon's mistake!!! Tara was discharged only to have to be immediately admitted again due to an infection in her blood, she had sepsis. The infection was treated and she never left the hospital and is still there to this day!!!!! On October 21, 2019 Tara was admitted for the Bone Marrow Transplant process.
She received chemotherapy on October 21-29 and on the 30th the transplant took place. Tara Mae was very sick during chemotherapy. On November 3, 2019 the central line had to be taken out because she had ANOTHER infection and ZERO white blood cells to fight off infection. She is receiving platelets daily. On Friday November the 8, 2019 she will have the central line replaced as long as the infection is gone.
Tara has a four year old sister, Kennedi who misses her mother very much. She is not allowed to go to the BMT floor where Tara is receiving treatment. Therefore Sarah can't see her four year old, one she is in PreK and she isn't allowed. Sarah wants to be there for Tara and Kennedi but she is so torn. I know for a fact that has to take a toll on Sarah, Triston and the whole family. Being away from your four year old, having a very sick baby with a disease with NO CURE IS JUST TOO MUCH!!!! Sarah, the mother, is also 5 months pregnant with her third child. Things are truly very difficult for the whole family. After the BMT process is over Tara Mae and Sarah will be transferred to a Ronald McDonald house near the hospital where she will continue to receive further treatment at least until the end of January 2020, maybe longer. Tara Mae and Sarah will spend Thanksgiving and Christmas in the hospital away from family!!!!!!! Imagine being away from your family at the holidays, your other four year old child and having to go through a pregnancy all by yourself. Sarah is so strong but for how long? All of us women know how our emotions go crazy being pregnant. She is one strong woman!!!
1 in 100,000 infants carry this disease and Type I like Tara Mae has, there are only 987 listed World Wide!!!!! Sarah and Triston are going to need special transportation for Tara Mae. You see, Tara doesn't crawl, or walk. We are not real sure that she ever will be able to. It all depends on if the bone marrow is rejected or accepted. Things are just so complicated with this disease. AGAIN THERE IS NO CURE!!!
I am asking for donations to help Sarah and Triston continue to be able to be with Tara Mae and to provide several things that she will need when she returns home to Thomaston, Ga. Sarah has been unable to work due to the illness with Tara Mae. Sarah is her caregiver!!! Triston is the only adult providing income to the household. Everyone who has a child would want to be with their child during a procedure, a fundraiser of this sort will help replace the money he would miss out on due to not working on those days. He works full time and is trying to keep the household running all alone. We all know how difficult that is this day and time, it takes two incomes but he is making it work for now!!! They are going to need a new bed for Tara, special made clothing due to G tube, and most importantly transportation to get to and from Egleston in Atlanta, Ga. They have a 2000 Buick , it is ok for them but they need something that is wheel chair accessible for Tara. If you can find it in you heart to donate I would greatly appreciate it. This will be an ongoing fundraiser and I will update very often as to how Tara Mae is progressing. We never know when things like this will happen and never in a million years did I expect it to happen to mine. I'm not a friend of the family. I am Sarah's Mother and Tara Mae's MiMi!!! My heart breaks to see my daughter pregnant, alone, away from family sleeping on a fold out couch. No one knew this would happen to Tara Mae, no one expected it. Everyone involved with Tara Mae has had a shocking change to their lives!!!! It takes a village to raise a child. TaraMae has a huge support system through Facebook and Family!!! She is loved by so many!!!! As a parent we all do what we have to for our children. Sarah is doing just that, sacrificing everything for this precious sick baby. She will kick this Hurlers Syndrome with her BOOTS!!!!!! May God bless each and everyone of you!!!!
On October 4, 2019 Tara had to have ANOTHER procedure on the central line because only a single lumen was placed and it should have been a double. Surgeon's mistake!!! Tara was discharged only to have to be immediately admitted again due to an infection in her blood, she had sepsis. The infection was treated and she never left the hospital and is still there to this day!!!!! On October 21, 2019 Tara was admitted for the Bone Marrow Transplant process.She received chemotherapy on October 21-29 and on the 30th the transplant took place. Tara Mae was very sick during chemotherapy. On November 3, 2019 the central line had to be taken out because she had ANOTHER infection and ZERO white blood cells to fight off infection. She is receiving platelets daily. On Friday November the 8, 2019 she will have the central line replaced as long as the infection is gone.
Tara has a four year old sister, Kennedi who misses her mother very much. She is not allowed to go to the BMT floor where Tara is receiving treatment. Therefore Sarah can't see her four year old, one she is in PreK and she isn't allowed. Sarah wants to be there for Tara and Kennedi but she is so torn. I know for a fact that has to take a toll on Sarah, Triston and the whole family. Being away from your four year old, having a very sick baby with a disease with NO CURE IS JUST TOO MUCH!!!! Sarah, the mother, is also 5 months pregnant with her third child. Things are truly very difficult for the whole family. After the BMT process is over Tara Mae and Sarah will be transferred to a Ronald McDonald house near the hospital where she will continue to receive further treatment at least until the end of January 2020, maybe longer. Tara Mae and Sarah will spend Thanksgiving and Christmas in the hospital away from family!!!!!!! Imagine being away from your family at the holidays, your other four year old child and having to go through a pregnancy all by yourself. Sarah is so strong but for how long? All of us women know how our emotions go crazy being pregnant. She is one strong woman!!!
1 in 100,000 infants carry this disease and Type I like Tara Mae has, there are only 987 listed World Wide!!!!! Sarah and Triston are going to need special transportation for Tara Mae. You see, Tara doesn't crawl, or walk. We are not real sure that she ever will be able to. It all depends on if the bone marrow is rejected or accepted. Things are just so complicated with this disease. AGAIN THERE IS NO CURE!!!
I am asking for donations to help Sarah and Triston continue to be able to be with Tara Mae and to provide several things that she will need when she returns home to Thomaston, Ga. Sarah has been unable to work due to the illness with Tara Mae. Sarah is her caregiver!!! Triston is the only adult providing income to the household. Everyone who has a child would want to be with their child during a procedure, a fundraiser of this sort will help replace the money he would miss out on due to not working on those days. He works full time and is trying to keep the household running all alone. We all know how difficult that is this day and time, it takes two incomes but he is making it work for now!!! They are going to need a new bed for Tara, special made clothing due to G tube, and most importantly transportation to get to and from Egleston in Atlanta, Ga. They have a 2000 Buick , it is ok for them but they need something that is wheel chair accessible for Tara. If you can find it in you heart to donate I would greatly appreciate it. This will be an ongoing fundraiser and I will update very often as to how Tara Mae is progressing. We never know when things like this will happen and never in a million years did I expect it to happen to mine. I'm not a friend of the family. I am Sarah's Mother and Tara Mae's MiMi!!! My heart breaks to see my daughter pregnant, alone, away from family sleeping on a fold out couch. No one knew this would happen to Tara Mae, no one expected it. Everyone involved with Tara Mae has had a shocking change to their lives!!!! It takes a village to raise a child. TaraMae has a huge support system through Facebook and Family!!! She is loved by so many!!!! As a parent we all do what we have to for our children. Sarah is doing just that, sacrificing everything for this precious sick baby. She will kick this Hurlers Syndrome with her BOOTS!!!!!! May God bless each and everyone of you!!!!
Organizer and beneficiary
Michelle Whittington
Organizer
Roberta, GA
Sarah Clark
Beneficiary