Thursday, March 24, 2011

Help My Sweet Little Niece....

 My niece Nataliyah is 3.5 months old and was recently diagnosed(More here) with Cornelia de Lang Syndrome (CdLS), it has been a life changing situation for my sister Keely, brother-in-law Gabe and nephew Eli(4yr.).


They planned very thoughtfully and carefully as to when to have another baby and it took a while to conceive. Never in their planning did they consider having a baby with special needs and all that comes along with it. Read more about CdLS here.

My sister has been on maternity leave and was planning on going back to work right about now... because they need her income. She planned and saved for daycare... never considering having to pay quite a bit extra  for special in home nursing care. Little Nattie has a feeding tube and only weighs 9lbs 7oz, which is way below normal for her age. They now have years of therapy, surgeries, special in home care, additional medical expenses and who knows what else.  Since they have insurance and make a moderate income, they do not qualify for any of the programs that could  help them...even though they have paid into them.

As a lot of us know the first year of our baby's life is hard for us parents under normal circumstances, let alone a baby who has to be fed every 3 hours by tube, who throws up a good percentage of her feedings if not held still on her side for at least an hour, who has to be driven an hour for special Dr. apts and then some... plus all the normal baby stuff.  Add to that the stress of wondering daily how they are going to afford child care, medical bills, and all the therapy this sweet little girl needs and deserves. The catch 22 is my BIL can not quit his job as he has union medical benefits which they clearly need and my sis can not quit her job to stay home as they need her income.

Now to the point... My Aunt and Uncle with help from our family will be putting together a special fundraiser to help out the Aguilar family with the financial burden they are experiencing.

The event is being held April 16th from 2-5pm at the Harbor View Restaurant  in Sausalito CA.
Click here to access the Evite and RSVP.

Click here to buy tickets to the event.Click Here to Get Tickets

If you are unable to attend but would still like to help out.... I have set up a donate button here on the old blog. It is set up through paypal so no worries about security issues. I am also giving 25% of all sales from my shoppe from now until April 16th to Nattie.

Just click on this button to donate.
I know it is hard times for everyone out their right now, so any amount big or small is greatly appreciated and will be used to care for our sweet little NATTIE.


Sophia said...

So sorry to hear about your niece! I know how frustrating it is for people who "fall through the cracks" of all the help that's available out there - people who clearly need it.

craftytammie said...

One of my best friend's little boy has Cornelia deLange. They live in KC. She may be able to help your sister with info, if she wants I can put you in contact with her. Sorry to hear about this!