Re: Little Larissa - please read
Posted: Sat Mar 26, 2011 10:31 am
What a lovely surprise to see this update and current pictures of little Larissa. Thank you for thinking of us and sharing them.
Kathy
Kathy
Hi Nelson,brazilian wrote:She is using ComfortGel Petite, and it would be wonderful if someone could be able to contribute with a new mask, or even with replacement cushions. I have a friend going to the US, staying near Houston from April 1st to 6th, and he prompted to bring her anything she needed.
sister wrote:Hi Nelson,
I just read your post for the first time.It is so wonderful what you are doing for larissa.
I have a petite"zest" new, which is a very small nasal mask that she might could use.I also have cloth liners for it.
I also have a sleepweaver cloth mask that i would be glad to send both to you if you will pm me your address, or somewhere to send it.
GOD BLESS YOU!!
brazilian wrote:Hello to all in this forum, and greetings from Brazil!
I am a 50 yo enginner, born and living in Brazil, and I have been diagnosed with OSA 2 yrs ago, This forum was of great help when choosing the proper equipment. I must say that my life quality improved greatly after starting treatment, and I often check the forum for new information.
Presently I own a ResMed S8 AutoSet Vantage for home use, and a Respironics REMstar 100M for travelling abroad (which I do quite a lot). I have two full face masks, a ResMed Ultra Mirage and a ResMed Mirage Quattro (my favourite).
The reason I am posting this is that I learned something recently that broke my heart, and I would like to ask some advice from anyone who could be interested in helping me. Please follow.
In Brazil, there is no government aid for OSA patients, the national health service is quite poor, and you need to rely on private health plans, if you have the money to pay for that.
I was introduced recently to a little 3-year old girl, called Larissa (see picture below), who has suffered from sleep apnea since she was 1yr9mo old. She has already had 3 cardiorespiratory arrests due to that, and has been since then living in the intensive care unit of a public hospital, in a ventilator system during the nights.
She is confined to the hospital, and can not leave it, because their parents are utterly poor and do not have the slightest condition to buy the recommended equipment (Respironics Synchrony BIPAP). She is prescribed a 15/5 pressure level.
She is a lively and intelligent child, and plays everywhere around her hospital room, but this is all of life she has had the opportunity to experience so far.
Importation taxes are so high in my country, that the equipment would cost almost three times more if they had to buy it.
I talked to her doctor today, and asked her if she could use a CPAP with EPR machine, which is much cheaper (although still quite expensive for our parameters). The doctor could not answer me, since they have never had the chance to test it with the girl.
Now, the questions I have to this forum:
- Could possibly a CPAP with EPR be suitable to her? I am traveling to Virginia, USA next week, and am considering lending them my ResMed S8 AutoSet for a week's test. If this works, they could have a better option than an expensive BIPAP.
- I always travel with my CPAP prescription with me, and I could bring one device along with me without any problems when I return to Brazil on May'2nd. This may be the silliest of the questions, but could anyone, by any chance, have an used CPAP (or even a BIPAP) machine that could be donated to her?
Sorry for my frankness, but I am really intended to do something to allow this lovely girl to have an almost normal life, with her parents and in her own home. I do not have the means now to buy myself a BIPAP for her, otherwise I would do that.
I will be more than glad for any advice or help you could give me.
Best regards to all.