Please help Anna get needed Physical Therapy Equip

PLEASE READ UPDATE AT THE BOTTOM 

Hi, my name is Candace and I am Anna’s mom.

I am attempting to raise money to help me purchase some very much needed physical therapy equipment/products for home use. (Thick gymnastics mats, big foam stacking shapes used to help crawl and pull up on, a specialty baby bicycle seat made for disabled children with low muscle tone, also being able to purchase a Nugget or two (it’s a foam couch close to the floor…..search for Nuggets’ website and it’s the 2nd picture below) would be so incredibly helpful.

Anna’s Story 

Anna was diagnosed before birth with trisomy 21 (Down’s Syndrome). With that diagnosis comes all sorts of not so fun side affects. First four weeks of her life were spent in NICU where one of Anna’s tests returned as positive for SCID - Severe Combined Immunodeficiency (same disease that a young John Travolta played in a movie called The Bubble Boy).

Finally, after numerous follow up testing, living on oxygen, a feeding tube, in isolation where we could not have skin to skin contact with Anna. The third test results came back with slightly better news. Anna would be discharged but with extremely strict rules about going anywhere and meeting anyone. Anna has an extremely weak immune system, it is barely detectable at times. Her condition is called lymphopenia (kind of like having advanced AIDS without having AIDS) Anything that she catches (bacterial, fungal or viral) we end up in the hospital when she is finally discharged we are stuck inside and in isolation for a long time. (It takes Anna months to recover, we are still struggling with the side effects of covid that she had in October of 2022, she is extremely sleepy and tires out quickly from activities)

Anna has given the title “stay at home mom” a new definition……we go to the doctor’s offices and drive through pharmacies. Anna’s immunologist has instructed us to stay home and not have anyone visit. When we did skip that advice finally in October, for Anna to meet her Papa, we ended up in the hospital for 6 days, in isolation with covid and the flu where she received the infusion treatments and I got to sleep on the mini Flintstone couch. (Yes everyone was vaccinated and boosted and masked even Anna) She just has an extremely weakened and sensitive immune system.

To summarize this past year it has been exhausting, full of ups and downs and other cliches. Fully coming to terms with a diagnosis of Down Syndrome, heart problems and immunodeficiency disease has been extremely difficult on our entire family.  So many sacrifices have been made for Anna’s health, all the kids have been super understanding.  We all adore Anna, she is amazingly amazing and as tough as they come when dealing with any problem that she faces.

Anna cannot attend physical therapy right now. Physical therapists cannot come visit our home. Staying alive and staying out of the hospital is our main goal until we receive clearance from her immunologist.

So for now, I have been improvising with what we have at home to help her gain strength. I watch YouTube videos and have read a million websites about working on physical therapy techniques with her. It is very difficult to improvise with pillows and other random items that we currently have at home. Anna is now 12 months old and still cannot sit unassisted.

Our funds currently are extremely limited, many times we have to choose what bills to pay each month. Physical therapy equipment is not free……it also is very large, and I have yet to figure out how to shoplift off the internet (just kidding ……..unless anyone knows how to do it without getting caught…..dm me)

It would be soooooo incredibly helpful if anyone who sees this could donate anything, and if not, please share and pray or send good vibes out into the universe for us. We most certainly need them.

*side note*

I am aware of Social Security Disabled Benefits, I have applied on Anna’s behalf…….it is literally the slowest worst process to go through. I would rather sit at the DMV for 6 months waiting for my number to be called just to arrive at the counter with the wrong forms, rather than ever having to deal with SS again.

*side note part two

It is extremely difficult to ask anyone for any help. I am mortified that I have to ask. I am currently unable to work, there just are not daycares centers that can accommodate Anna’s health, medical and mental needs. Health insurance is health insurance…..and any assistance programs in Texas are well….this is Texas a red state……they are all for babies being born, not so much for helping anyone with disabilities. I guess if this doesn’t work out, I will purchase Anna some boots and she can pull herself up by her boot straps and fix her own genetic disabilities.

These are actually cute….and make “pulling yourself up by the bootstraps” definitely seem a lot more adorable.

Thank you everyone who took time to read this.

*UPDATE* March 11, 2023

I am extremely grateful for everyone’s donations they are going to help with Anna’s care immensely.

Thank you all so very much!

Unfortunately, after this week’s doctor appointment I have had to reset my original financial goal.  I have reset the goal to $5000 Anna is going to need a lot more support than I had originally anticipated.

Anna went to the doctor again this week and we have received not the greatest news……Anna only weighs 15lbs,  even though she has quite the appetite, her growth has slowed way down and she has lost muscle tone. She has dipped below her projected growth curve significantly and she is now considered by medical terms as “not thriving”.  Anna’s pediatrician thinks it might be long covid, but we have many more tests and specialists visits to hopefully rule out more serious diagnoses.

We have not given up on the home front, James has been working as much overtime as he can find.  I have been looking for ways to bring in extra income to contribute to the household as well.  As Anna’s primary caregiver, options are limited.  In two weeks our community is having a community wide garage sale, so we are selling everything and anything that we can do without. Hopefully that will also add a bit of money towards Anna’s medical care.

Again, I have to thank everyone who has helped us out in anyway that they can.  I can already feel the prayers being answered, the good thoughts and vibes have definitely renewed my resolve to do anything that is needed to provide everything that Anna needs.  (not that I did not feel that way before, but bad news after bad news, and struggling on top of already struggling took a toll on me/us, it definitely begins to feel so overwhelming and hopeless) 

I love and appreciate you all so deeply!  Thank you!