Skye needs our help

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rdhuston

New member
A beautiful little girl named Skye needs our help. Skye is a 22 month old who was diagnosed with Cystic Fibrosis at 5 days old. Today, she not only battles Cystic Fibrosis. Skye also battles, Auditory Neuropathy, Hearing loss in both ears, Dysmotility Syndrome, Severe Asthma, Allergies, Central Sleep Apnea, Colonized MRSA in her lungs, Colonized Group C strep in her lungs, Liver disease, Tacheomalacia, GERD and Heart Murmur/Pause.
Skye requires many daily medications, including being fed through her g-tube. Skye frequently sees many doctors which include the CF Clinic, a Motility Specialist, Physical Therapist, ASL teacher, Audiologist, Pediatrician, ENT, Speech/hearing specialist, Occupational Therapist, Feeding team, Allergist, and Ophthalmologist. Skye needs round the clock care, and luckily has an amazing, and devoted mother, and father who provide the best care for Skye. Their main goal is to make Skye as comfortable as possible, and as happy as they possibly can. Unfortunately, Skye's mother is unable to work due to the round the clock care that Skye needs. The financial burden is taking its toll, and creating a very stressful situation. Skye's father works full-time, but it's not enough to cover the mounting medical bills, medications, and the other bills that come along with having a child with many chronic medical issues. Skye's Mom, Kayla, along with help from Skye just started selling Scentsy to help with the financial burden as well. I informed Kayla that I wanted her to create a donation button which can be found on her blog at <a target=_blank class=ftalternatingbarlinklarge href="http://www.teamskyesthelimit.com/">http://www.teamskyesthelimit.com/</a> on the left hand side toward the middle of her page in hopes that others would reach out and assist with a monetary donation to help ease the burden a little.
Thank you for considering my request.

Denise
Mom to Emily 4 w/cf, Gavin 8, no/cf
 
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rdhuston

New member
A beautiful little girl named Skye needs our help. Skye is a 22 month old who was diagnosed with Cystic Fibrosis at 5 days old. Today, she not only battles Cystic Fibrosis. Skye also battles, Auditory Neuropathy, Hearing loss in both ears, Dysmotility Syndrome, Severe Asthma, Allergies, Central Sleep Apnea, Colonized MRSA in her lungs, Colonized Group C strep in her lungs, Liver disease, Tacheomalacia, GERD and Heart Murmur/Pause.
Skye requires many daily medications, including being fed through her g-tube. Skye frequently sees many doctors which include the CF Clinic, a Motility Specialist, Physical Therapist, ASL teacher, Audiologist, Pediatrician, ENT, Speech/hearing specialist, Occupational Therapist, Feeding team, Allergist, and Ophthalmologist. Skye needs round the clock care, and luckily has an amazing, and devoted mother, and father who provide the best care for Skye. Their main goal is to make Skye as comfortable as possible, and as happy as they possibly can. Unfortunately, Skye's mother is unable to work due to the round the clock care that Skye needs. The financial burden is taking its toll, and creating a very stressful situation. Skye's father works full-time, but it's not enough to cover the mounting medical bills, medications, and the other bills that come along with having a child with many chronic medical issues. Skye's Mom, Kayla, along with help from Skye just started selling Scentsy to help with the financial burden as well. I informed Kayla that I wanted her to create a donation button which can be found on her blog at <a target=_blank class=ftalternatingbarlinklarge href="http://www.teamskyesthelimit.com/">http://www.teamskyesthelimit.com/</a> on the left hand side toward the middle of her page in hopes that others would reach out and assist with a monetary donation to help ease the burden a little.
Thank you for considering my request.

Denise
Mom to Emily 4 w/cf, Gavin 8, no/cf
 
R

rdhuston

New member
<br />A beautiful little girl named Skye needs our help. Skye is a 22 month old who was diagnosed with Cystic Fibrosis at 5 days old. Today, she not only battles Cystic Fibrosis. Skye also battles, Auditory Neuropathy, Hearing loss in both ears, Dysmotility Syndrome, Severe Asthma, Allergies, Central Sleep Apnea, Colonized MRSA in her lungs, Colonized Group C strep in her lungs, Liver disease, Tacheomalacia, GERD and Heart Murmur/Pause.
<br />Skye requires many daily medications, including being fed through her g-tube. Skye frequently sees many doctors which include the CF Clinic, a Motility Specialist, Physical Therapist, ASL teacher, Audiologist, Pediatrician, ENT, Speech/hearing specialist, Occupational Therapist, Feeding team, Allergist, and Ophthalmologist. Skye needs round the clock care, and luckily has an amazing, and devoted mother, and father who provide the best care for Skye. Their main goal is to make Skye as comfortable as possible, and as happy as they possibly can. Unfortunately, Skye's mother is unable to work due to the round the clock care that Skye needs. The financial burden is taking its toll, and creating a very stressful situation. Skye's father works full-time, but it's not enough to cover the mounting medical bills, medications, and the other bills that come along with having a child with many chronic medical issues. Skye's Mom, Kayla, along with help from Skye just started selling Scentsy to help with the financial burden as well. I informed Kayla that I wanted her to create a donation button which can be found on her blog at <a target=_blank class=ftalternatingbarlinklarge href="http://www.teamskyesthelimit.com/">http://www.teamskyesthelimit.com/</a> on the left hand side toward the middle of her page in hopes that others would reach out and assist with a monetary donation to help ease the burden a little.
<br />Thank you for considering my request.
<br />
<br />Denise
<br />Mom to Emily 4 w/cf, Gavin 8, no/cf
<br />
<br />
 
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rosesixtyfive

New member
I hope I don't seem naive, but I wish that Skye's mother lived in a place where she could get some financial assistance. No one should have to spend the majority of their time keeping their child alive and worry about keeping their homes, cars, providing a good life for their children. I would like to write letters to the right people to help her. Does anyone have any suggestions as to who to write? What state do they live in? You can (PM) me if you would like.
Thanks,
rosesixtyfive, mother of Sam (ddf508), 17 months old
 
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rosesixtyfive

New member
I hope I don't seem naive, but I wish that Skye's mother lived in a place where she could get some financial assistance. No one should have to spend the majority of their time keeping their child alive and worry about keeping their homes, cars, providing a good life for their children. I would like to write letters to the right people to help her. Does anyone have any suggestions as to who to write? What state do they live in? You can (PM) me if you would like.
Thanks,
rosesixtyfive, mother of Sam (ddf508), 17 months old
 
R

rosesixtyfive

New member
I hope I don't seem naive, but I wish that Skye's mother lived in a place where she could get some financial assistance. No one should have to spend the majority of their time keeping their child alive and worry about keeping their homes, cars, providing a good life for their children. I would like to write letters to the right people to help her. Does anyone have any suggestions as to who to write? What state do they live in? You can (PM) me if you would like.
<br />Thanks,
<br />rosesixtyfive, mother of Sam (ddf508), 17 months old
 
R

rdhuston

New member
Skye and her family live in RI, they were able to get financial help from the state but only for 2 years, and those 2 years are up which is why they are struggling so much. I agree about writing letters to the right people, but I don't know who those people would be. I will have to look into that. I don't live in RI so I'm not real familiar with that state. Thanks for the note.
 
R

rdhuston

New member
Skye and her family live in RI, they were able to get financial help from the state but only for 2 years, and those 2 years are up which is why they are struggling so much. I agree about writing letters to the right people, but I don't know who those people would be. I will have to look into that. I don't live in RI so I'm not real familiar with that state. Thanks for the note.
 
R

rdhuston

New member
Skye and her family live in RI, they were able to get financial help from the state but only for 2 years, and those 2 years are up which is why they are struggling so much. I agree about writing letters to the right people, but I don't know who those people would be. I will have to look into that. I don't live in RI so I'm not real familiar with that state. Thanks for the note.
 
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LisaGreene

New member
How sad- this family is dealing with so much. CF can be hard enough without all of the other issues she has.

Has the family contacted CFRI? www.cfri.org. They might know of resources to help. Also, I think Boomer Esiason's org has help.

And, if you call Bev Donelson at 888-307-4427 she might have ideas. She founded CF Pharmacy (in Florida) and has been in the CF community for about 30 years (her granddaughter has CF)so she knows about all of the "compassion" programs that are out there.

And www.BraveKids.org has alot of resources listed by local community.

Also, have they tried getting help locally from their church? That can be helpful, too, if even to help mom and dad get a break.

I'll keep this family in our thoughts and prayers.
 
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LisaGreene

New member
How sad- this family is dealing with so much. CF can be hard enough without all of the other issues she has.

Has the family contacted CFRI? www.cfri.org. They might know of resources to help. Also, I think Boomer Esiason's org has help.

And, if you call Bev Donelson at 888-307-4427 she might have ideas. She founded CF Pharmacy (in Florida) and has been in the CF community for about 30 years (her granddaughter has CF)so she knows about all of the "compassion" programs that are out there.

And www.BraveKids.org has alot of resources listed by local community.

Also, have they tried getting help locally from their church? That can be helpful, too, if even to help mom and dad get a break.

I'll keep this family in our thoughts and prayers.
 
L

LisaGreene

New member
How sad- this family is dealing with so much. CF can be hard enough without all of the other issues she has.
<br />
<br />Has the family contacted CFRI? www.cfri.org. They might know of resources to help. Also, I think Boomer Esiason's org has help.
<br />
<br />And, if you call Bev Donelson at 888-307-4427 she might have ideas. She founded CF Pharmacy (in Florida) and has been in the CF community for about 30 years (her granddaughter has CF)so she knows about all of the "compassion" programs that are out there.
<br />
<br />And www.BraveKids.org has alot of resources listed by local community.
<br />
<br />Also, have they tried getting help locally from their church? That can be helpful, too, if even to help mom and dad get a break.
<br />
<br />I'll keep this family in our thoughts and prayers.
 
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