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  • Son: Age 6 months
  • Daughter: Age 2
  • Work full-time outside home
Diagnosis:....SS Disease!
hiswifebrit - 3 weeks ago
Hello to all the New Comers Group Members.

Hi my name is Britianey, I have a 2 year old..and a 6months old...My 6 months old was diagnosed with sickle cell anemia (SS Disease) at birth..while he was in NICU...and so far he has had 4 pain crisis and 3 hospitalizations...for pain alone! And I have been trying to find a support group for sickle cell anemia in my area but i keep getting referred to join a cancer support group. While I know that they are both deadly blood diseases...I would rather be in a sickle cell support group just because I need to feel that my husband and I are not alone I feel like we are the only young couple who has to raise a son with SS Disease in all of long beach..even when i take my son to the hemotologist at the Jonathan Jaquez cancer center here, i see nothing but kids with cancer and i feel like I can't talk to the other parents because their kids are going trough leukemia and mine isnt and my son is just on tylenol for pain and Penicillan twice a day until hes 6 years old..and antibiotics just incase he gets an infection..and there are other support groups in other cities, but they are to far.
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  • Daughters: Ages 11 & 8
  • Work at home
FamilyHost_Jen - 3 weeks ago
Hello hiswifebrit I am sorry to hear about what all of you are going through. One way to get support is to create a group here in Disney Family Community for parents who are dealing with the same issues you are. Visit our Tip of the Day - Creating new Groups - http://family.go.com/community/groups/newcomers-group-grp/tip-of-the-day----creating-new-groups-6696/ to learn how to create a group. Then join us in our Group Leaders Support group at http://family.go.com/community/groups/groupleadersupport-grp/ to pick up helpful hints and ideas for your group.
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  • Son: Age 6 months
  • Daughter: Age 2
  • Work full-time outside home
hiswifebrit - 3 weeks ago
Replying to ...
  Hello hiswifebrit I am sorry to hear about what all of you are going through. One way to get support is to create a group here in Disney Family Community for parents who are dealing with the same issues you are. Visit our Tip of the Day - Creating new Groups - http://family.go.com/community/groups/newcomers-group-grp/tip-of-the-day----creating-new-groups-6696 / to learn how to create a group. Then join us in our Group Leaders Support group at http://family.go.com/community/groups/groupleadersupport-grp / to pick up helpful hints and ideas for your group.  
By FamilyHost_Jen
Thank you FamilyHost_Jen! I will try that out! My husband and I will do it together!
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