Supporting a family through loss - Mothering Forums

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#1 of 8 Old 05-28-2013, 09:02 PM - Thread Starter
 
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Hi ladies

 

I need some advice. A friend of mine's little one is 2 months old and tragically has a mitochondrial disease meaning she will not be around much longer. My friend is in a different province from me and as such I cant be physically with her through this time. I am putting together a care package to send to her and I was wondering if any of you can help me with ideas on what would be nice to send to them at this time. I was thinking some personal care items? I have not been through this with a friend before and am a bit lost. I am attempting to get them a photographer through now i lay me down to sleep.

 

Any advice would be appreciated. I want to show that I am there for them despite not being able to be there physically. My heart is breaking for this family. :(


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#2 of 8 Old 05-29-2013, 06:30 AM
 
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I would make sure that the diagnosis of mito is considered fatal. I have a friend whose son has mito and he is now 5; make sure you're not jumping the gun.


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#3 of 8 Old 05-29-2013, 11:37 AM - Thread Starter
 
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I'm not jumping the gun, she told me that it was. 


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#4 of 8 Old 05-29-2013, 11:42 AM
 
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My friend also has a child with mito. It is fatal, but the child has lived over 4 years.

A care package would still be nice even if the baby lives for a few years. I'm sure the parents are exhausted.

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#5 of 8 Old 05-29-2013, 11:45 AM - Thread Starter
 
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This baby isnt expected to live much longer, she has been in NICU since birth (2 months). She also only has one kidney and a few other health issues. I really do wish that she would live for another few years but the family are expecting a much shorter time.

 

I am going to send a care package in a few weeks regardless of what is going on. Any ideas of what parents could use at this time? 


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#6 of 8 Old 05-29-2013, 11:55 AM
 
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Gift cards to coffee shops or restaurants that would deliver to the hospital. Books or magazines to read. Lotion as hands can get very dry with all the hand washing in hospitals. Prepaid phone cards if they don't have unlimited calling on a cell phone.

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#7 of 8 Old 05-29-2013, 12:05 PM - Thread Starter
 
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thank you!


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#8 of 8 Old 06-08-2013, 05:05 PM
 
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i agree with a 100% mom when i was in the nicu with my youngest those type of things  help alot maybe you could send them a hair brush too and another thing that was good fresh baked cookies as well tooth paste and tooth brush too


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