Hannah and Jake's Medical Fund
Donation protected
Hi, my name is Maureen Middlebrooks, and I'm starting this campaign on behalf of my friend, Stephanie Klock, and her family, who until now have been dealing with their struggles: medical, financial, physical, and emotional, on their own. It has become too much for one family, no matter how strong and loving to deal with, and that is why I am asking for your help.
Stephanie is the mother of two beautiful children, Hannah (12), and Jake (10), who are both diagnosed with Ponto Cerebellar Hypoplasia Type 6. It is an extremely rare, severe, progressive, and fatal disease. They are the oldest survivors in the world. It's characterized by profound delay, seizures, microcephaly, and numerous neurological complications. Hannah and Jake have nursing care during the week, while Stephanie works full time. During the nights and weekends, they have no outside assistance.
Her husband, Paul, has an inoperable brain tumor, with all the challenges that poses. He is not Hannah and Jakes's biological father, but has embraced them as his own.
If you've ever had a serious medical problem, then you know how dealing with health insurance companies can make you so much sicker. It can be like a full time job. Stephanie has to do this for two children, whose files are enormous. She also has to deal with the state and its often ridiculous requirements and regulations, too frequently resulting in the needed service, or requested item being denied. Hannah has a hospital bed, but the request for Jake was denied. Stephanie is saving to purchase one for him. Their special car seats have to be paid for out of pocket. The type of liquid nourishment the state would pay for is not appropriate for Hannah and Jake due to ingredients their bodies cannot tolerate, so Stephanie spends $100 per month so they can have the correct formula. So many things that are necessary for Hannah and Jake's health and safety are denied and fall to Stephanie and Paul to pay. Last year alone, they paid $65,000 (that is not a typo) in out of pocket medical expenses. They fall through so many cracks. They need your generosity.
Stephanie is employed in the social service/non profit sector and has accessed whatever services and benefits her children are eligible for, in case, like me, you were thinking how could this be possible. Stephanie knows too many families in similar situations that couldn't survive the enormous stresses. She said she totally understands. She is trying so hard to keep her head above water and her family intact.
I asked Stephanie what would be something that she wanted, that would help her, make her feel better. Her eyes filled up with tears and she said, “just one time, to be able hold my children and read them a book from beginning to end, just focusing on them, being in the moment, without the constant worrisome intrusive thoughts about the bills that need to be paid, the money that is going to run out.” I would hope that anyone reading this would want to help grant her this simple wish.
Stephanie's father, who lives in Buffalo, is dying from pancreatic cancer. She can't visit him because she can't leave her children and they are not medically cleared to travel. There is a respite facility that she was hoping the children could go to, but their needs are too great for the facility to ensure their safety, and were not accepted. Let's help her hire nursing services, so she can make the trip.
If you're reading this, you are no doubt wondering how anyone can cope with all these challenges; added to this, Stephanie has never heard her children call her mommy, or tell her they love her. She has never been able to celebrate their milestones. She has so much grace and patience. She is such a fighter when it comes to her children's needs. She will say that she can be strong, because Hannah and Jake are so brave and strong. The love and care she gives to her children is boundless and endless. All the time, with the awareness that she will lose them.
At this time of year, when so many worthy causes are vying for your contributions, you want to know that your donation will really make a difference, that the money will be used wisely. Please consider this family, and know that any amount you can donate, will be greatly appreciated and used to help Stephanie continue to care for her beloved children.
Thank you,
Maureen
Stephanie is the mother of two beautiful children, Hannah (12), and Jake (10), who are both diagnosed with Ponto Cerebellar Hypoplasia Type 6. It is an extremely rare, severe, progressive, and fatal disease. They are the oldest survivors in the world. It's characterized by profound delay, seizures, microcephaly, and numerous neurological complications. Hannah and Jake have nursing care during the week, while Stephanie works full time. During the nights and weekends, they have no outside assistance.
Her husband, Paul, has an inoperable brain tumor, with all the challenges that poses. He is not Hannah and Jakes's biological father, but has embraced them as his own.
If you've ever had a serious medical problem, then you know how dealing with health insurance companies can make you so much sicker. It can be like a full time job. Stephanie has to do this for two children, whose files are enormous. She also has to deal with the state and its often ridiculous requirements and regulations, too frequently resulting in the needed service, or requested item being denied. Hannah has a hospital bed, but the request for Jake was denied. Stephanie is saving to purchase one for him. Their special car seats have to be paid for out of pocket. The type of liquid nourishment the state would pay for is not appropriate for Hannah and Jake due to ingredients their bodies cannot tolerate, so Stephanie spends $100 per month so they can have the correct formula. So many things that are necessary for Hannah and Jake's health and safety are denied and fall to Stephanie and Paul to pay. Last year alone, they paid $65,000 (that is not a typo) in out of pocket medical expenses. They fall through so many cracks. They need your generosity.
Stephanie is employed in the social service/non profit sector and has accessed whatever services and benefits her children are eligible for, in case, like me, you were thinking how could this be possible. Stephanie knows too many families in similar situations that couldn't survive the enormous stresses. She said she totally understands. She is trying so hard to keep her head above water and her family intact.
I asked Stephanie what would be something that she wanted, that would help her, make her feel better. Her eyes filled up with tears and she said, “just one time, to be able hold my children and read them a book from beginning to end, just focusing on them, being in the moment, without the constant worrisome intrusive thoughts about the bills that need to be paid, the money that is going to run out.” I would hope that anyone reading this would want to help grant her this simple wish.
Stephanie's father, who lives in Buffalo, is dying from pancreatic cancer. She can't visit him because she can't leave her children and they are not medically cleared to travel. There is a respite facility that she was hoping the children could go to, but their needs are too great for the facility to ensure their safety, and were not accepted. Let's help her hire nursing services, so she can make the trip.
If you're reading this, you are no doubt wondering how anyone can cope with all these challenges; added to this, Stephanie has never heard her children call her mommy, or tell her they love her. She has never been able to celebrate their milestones. She has so much grace and patience. She is such a fighter when it comes to her children's needs. She will say that she can be strong, because Hannah and Jake are so brave and strong. The love and care she gives to her children is boundless and endless. All the time, with the awareness that she will lose them.
At this time of year, when so many worthy causes are vying for your contributions, you want to know that your donation will really make a difference, that the money will be used wisely. Please consider this family, and know that any amount you can donate, will be greatly appreciated and used to help Stephanie continue to care for her beloved children.
Thank you,
Maureen
Organizer and beneficiary
Maureen Middlebrooks
Organizer
Tucker, GA
Stephanie Klock
Beneficiary
