The story of Stephanie
Im sure you laughed when you read the title but yeah I call it that because just like a ghost my this disease keeps appearing and re-appearing in our lives for the longest of times and in these times it has appeared with different faces.
My daughter Is an 8 year old beautiful baby girl,my one and only beloved by my maker.
As of this point I can say that she has battled this ghost for literally her whole life whereas 4 years battling it without being aware of its name and existence and 4 years being extra serious in wanting to find the why’s the where’s and the what’s.
Please,do not judge my motherhood when I say that I only started this serious medical journey a year ago…..
I’ll answer your why’s.
See,it’s one thing to watch your daughter grow but it’s also another thing to watch her not catch up with her agemates or live the life her agemates are.
In many occasions, she’d get slightly I’ll,I’d simply begin with home remedies(which I can confess most have actually worked through a good stay home,a massage therapy,cold press here and a good bowl of soup)but in the times that I’ve taken her to hospital is when her Lil sickish days have decided to wear jacket proofs from me haha.
To be truthfully honest,to this day I haven’t bought many over the counter medicines for my daughter concerning the usual sicknesses our little ones keep bringing home…and that really still is a baffle for me till this day!.
My daughter had her first seizure episode in the year 2021,it was a sight no mother would ever even think to see. I should say I vividly remember how that day was so confusing, we had a good morning with my baby,I was on my way out to the market I even remember texting her father(he lives in a different city from us) that I have some errands to run,next thing he knows is me sending him pictures of his daughter bleading. Rushed her to the nearest hospital that could attend to her and aid her to atleast regain back to a stable state which they did but then boom!they give us their estimated breakdown of how much it would cost us to admit her I was in distress that my ancestors could feel my shock.
I decided to take her to an affordable goverment hospital that could atleast do the “slow but sure proceedures” sadly yes they were SLOW,so slow that it took us three hours for them to begin the admission process.
We stayed there for 6 days and left the hospital with no diagnosis,just assumptions that looked like they too could not understand and because my daughter was stable,I said she’ll be fine…which she was for quite a while.
So,life went on as usual,baby got better and lived her happy days so well.
2023 was the year I give a salute to because from the day my mother called me (I was not living in the same state that my mom ,brothers and daughter was in at the time)at midnight telling me my baby has collapsed and was heading to the ICU to the day the doctors wanted to do a BMA on her(bone marrow aspiration) just so they could find what is eating her cells,to the day a so called friend who happens to be a doctor wanted to play monkey business with my child’s platelets,to the day we decided to start a fresh medical follow up in a different city which I will give props to for giving us such an honest doctor that took us through this scary journey and did quite alot + a BMA and found out it was Aplastic Anaemia.
She knew it would be something she could handle back home cz her health was not that bad until the frequence of our visits started being way too often that’s when she felt it was beyond her and wouldn’t want to keep us in our country when she knows a far better person in India to handle our child.
Which we did…we are currently in India,we’ve completed 1 month and three weeks now and in those weeks was when we came to learn that she has something else known as Fanconis Anemia,yeah I’m gonna let you google that out cz oh well,it was alot to understand.
Take a minute to breathe…..
A week later, doctor stops the treatment and hits us with a “it’s not Fanconis nor is it Aplastic…..
Yeah ..bummer huh!
I really like this doctor because of his many years of experience he isn’t money minded,he trust his gut and can’t proceed without finding the genesis of the whole diagnosis that we came by ..
He made it clear from the genetics doctors that what my baby has is what is called LIG4 syndrome (Ligase 4)
It’s a rare genetics chromosomal failure yada yada!ask google my love I don’t want to bore y’all.
It’s still hurts that my baby has this diagnosis it really does because no mother wants that but because my make decided to to give it to me and her ,I’m just going to hold her up high and trust that she’ll get through it all .
The only cure to her bone marrow failure is a stem cell transplant which her father was tested and found to be a 50% match .
We haven’t started the transplant but so many various tests are undergoing and I have given my 100% trust to these doctors that all will be well….so dear Ghost disease….I will find you…and I will kill you (Liam Neeson voice)