For Sweet Ara
Donation protected
I do not know this family personally. Mom contacted me in May to see if I could come to their house to do a 2nd birthday photo session. She was SO excited. She sent me images that she had found of all the ideas that she loved. She informed me, that due to Ara's condition, we'd need to stay in the house to do the shoot. Ara had to wear a mask just to go outside. We made the plans and set the date.
A couple days before the shoot, mom contacted me and told me that her sweet girl had been admitted to the hospital and she didn't know when she'd get to come home. She asked if instead of losing her deposit completely, if I could come to the hospital to get whatever shots I could. She was devastated. I told her that I had no problem coming to the hospital, but also that I had no problem waiting until her sweet baby was home and smiling again to do the shoot and by no means was she going to lose her deposit.
Today, she contacted me and told me that sweet Ara may not ever come home. My heart sank. I feel helpless. I want to do something, anything that makes a difference. I cannot begin to imagine what this sweet family is going through.
Of course, I returned her deposit, but also offered to come do a session at the hospital, free of charge, of mom and dad just loving on their sweet baby. At this time, they are not interested as Ara "just isn't their baby right now, she's swollen from head to toe". I respected their wishes. But still felt a strong want/need/desire to help in someway. This is the only way I know how. Here is their story in a nutshell!
Miss Ara was diagnosed at 8 months is MPS 1. This means that her body does not create an enzyme needed to break down a complex sugar. She started doing enzyme replacement therapy every week. Her family was living in Alabama at the time, and had to drive 3 and 1/2 hours every week to take her to her treatments.
This therapy doesn’t reach the brain, so she would need to do a bone marrow transplant. They called around to different hospitals but the U of M was the top for this disease. So they moved here last September and she started getting chemo in January. Then she got her transplant on February 9th.
She started having issues with antibodies, so they tried various things to get rid of them but nothing seemed to work. These antibodies have been destroying her white blood cell count, so she can’t fight off anything.
She had a fever the day before her 2nd birthday, so she got admitted to the hospital. It was that day they found out that her transplant had failed and that she would need another one.
It was that night, on her birthday, that they found out she had pneumonia and needed oxygen. They got transferred to the ICU.
They also found out from an x-ray that morning, that due to infection, she had bleeds in both lungs. Because of this, she was sedated and put on a ventilator (life support).
The next day, they found out she had e-coli from her system not being able to fight off anything. Her e-coli has is being treated effectively, and she is on medications from pneumonia.
...They say when MPS 1 patients get a lung bleed it’s rare that they don’t re-bleed. If that happens, she can never be taken off the ventilator.
Mom has taken off work indefinitely to be with her. If you are unable to donate, it's okay. BUT, please please please pray for recovery and healing for this sweet, little girl. Pray for peace for her parents. Pray for knowledge and wisdom for her care team.
Update: All funds raised will now go towards afterlife expenses.
Thank you.
A couple days before the shoot, mom contacted me and told me that her sweet girl had been admitted to the hospital and she didn't know when she'd get to come home. She asked if instead of losing her deposit completely, if I could come to the hospital to get whatever shots I could. She was devastated. I told her that I had no problem coming to the hospital, but also that I had no problem waiting until her sweet baby was home and smiling again to do the shoot and by no means was she going to lose her deposit.
Today, she contacted me and told me that sweet Ara may not ever come home. My heart sank. I feel helpless. I want to do something, anything that makes a difference. I cannot begin to imagine what this sweet family is going through.
Of course, I returned her deposit, but also offered to come do a session at the hospital, free of charge, of mom and dad just loving on their sweet baby. At this time, they are not interested as Ara "just isn't their baby right now, she's swollen from head to toe". I respected their wishes. But still felt a strong want/need/desire to help in someway. This is the only way I know how. Here is their story in a nutshell!
Miss Ara was diagnosed at 8 months is MPS 1. This means that her body does not create an enzyme needed to break down a complex sugar. She started doing enzyme replacement therapy every week. Her family was living in Alabama at the time, and had to drive 3 and 1/2 hours every week to take her to her treatments.
This therapy doesn’t reach the brain, so she would need to do a bone marrow transplant. They called around to different hospitals but the U of M was the top for this disease. So they moved here last September and she started getting chemo in January. Then she got her transplant on February 9th.
She started having issues with antibodies, so they tried various things to get rid of them but nothing seemed to work. These antibodies have been destroying her white blood cell count, so she can’t fight off anything.
She had a fever the day before her 2nd birthday, so she got admitted to the hospital. It was that day they found out that her transplant had failed and that she would need another one.
It was that night, on her birthday, that they found out she had pneumonia and needed oxygen. They got transferred to the ICU.
They also found out from an x-ray that morning, that due to infection, she had bleeds in both lungs. Because of this, she was sedated and put on a ventilator (life support).
The next day, they found out she had e-coli from her system not being able to fight off anything. Her e-coli has is being treated effectively, and she is on medications from pneumonia.
...They say when MPS 1 patients get a lung bleed it’s rare that they don’t re-bleed. If that happens, she can never be taken off the ventilator.
Mom has taken off work indefinitely to be with her. If you are unable to donate, it's okay. BUT, please please please pray for recovery and healing for this sweet, little girl. Pray for peace for her parents. Pray for knowledge and wisdom for her care team.
Update: All funds raised will now go towards afterlife expenses.
Thank you.
Organizer and beneficiary
Marggie Duncan
Organizer
Burnsville, MN
Bethany Gulledgs
Beneficiary
