Anajee’ and Her Sister A’kirah Weldon
Before I even knew that this Disease existed my oldest daughter Anajee’ was dying, she got the feeding tube before the diagnosis. She was eating and losing weight at the same time because it would take everything in her to hold herself up and again she had been getting like this since she was 4 but I couldn’t even get the doctors to look at her until she started falling.
They have been diagnosed since they was 8 and 5 my older daughter progressed faster then my youngest with this. Within this past year(2018) my youngest daughter A’kirah progressed rapidly. At the beginning of this year she was walking and talking now she is fully dependent and no longer can walk, talk, and can only feed though a feeding my older has been like this since she was 11. But she stopped walking at 8. It took the doctor years to even pay attention.
A’kirah broke her shoulder last year she started falling alot.
I am fighting so hard to maintain their lives but the support is nonexistent. I know that there are more of there family here suffering with this illness but we don’t know them because my kids father wasn’t raised with them.
Sleeping Beauty with a twist she want her to be a zombie lol but a pretty zombie, we was going to do that this year but she was in the hospital and heavy medicated. So the sleeping beauty part was right. I miss seeing them smile.
It is so hard watching my daughters dealing with this and I can’t stop it. My daughters are now 13 and 15, Both of them now are bedridden and on ventilators. I just want to stop this my oldest one has been in this stage of it for the past 4 years and my youngest daughter has been in the hospital since the week before Halloween and got her trach on the 4th of this month. I don’t know if i am making them suffer because I have them on ventilators I don’t want to decide when they transcend. That is between them and God.
Because at this stage of it and my youngest daughter is almost identical to her sister I am really afraid now more then ever. My oldest daughter this past year heart rate gets low more and more as time pass. My youngest daughter went from no respiratory illness not ever a cold to now on a ventilator and getting pneumonia for the first time this past October.
I got robbed of the most beautiful personalities I have ever known but also though them I have been able to see the truth strength of life especially Anajee’ she has survived the impossible and when I believe it is over she keeps fighting so far there is no one in this world that I know is strong then her but her little is becoming a runner up.
She loves being in front of the camera and getting her pictures taken you could never sneak up on her and take a picture she would always be ready and smiling.
She is just like her sister but at the same time she likes horror. She is pretty in pink meets the bride of Frankenstein and zombies. She loves Halloween and everything about it but at the same time she loves being a Disney Princess her favorite is Sleeping Beauty with a twist she want her to be a zombie lol but a pretty zombie, she’s too sick now though.