17 MONTH OLD BATTLING FOR QUALITY LIFE

After a complicated pregnancy process and elective c- section due to baby’s neural tube defect my sister (MEHWISH ALI) and her husband (FAIZAN ALI) were blessed with the birth of twin boys on May 29th 2019. The elder one was healthy but unfortunately the younger one Avyaan Ali was born with:

1.    Giant Occipital Encephelocele (Neurological disorder)

2.    Bilateral club foot



 
SURGICAL HISTORY

Just having a life of 2 days the little one had been admitted in NICU intubated. Mother without taking any complete rest from her major C- section procedure have been by his bedside day and night. 

Avyaan’s brave fight against never ended treatment journey comprises of following surgical procedures

1.    Repair of Occipital Encephelocele June 2019

2.    Insertion of Ventoperitonial Shunt September 2019

3.    Craniosyntosis Craniotomy January 2020

4.    Tendons Achilles B/L Tenotomy August 2019 (day care procedure for club foot after 7 weeks of intense casting sessions). 




 Present Condition

Avyaan Ali due to his multiple cranial procedure is now going through the condition called Plagiocephaly (Condition in which one side of the skull flattened most commonly caused by positioning the head and Craniosyntosis). The treatment option determined by the doctors is the cranial remolding helmets which will direct towards the natural skull growth. Unfortunately, this course of advance treatment is not available in the country of residence (Pakistan) and hence, the only option to go to DUBAI in order to get this treatment.Time is of essence and child has only till MAY-2021, to correct the abnormal head shape. 


If left untreated: Once the sutures are permanently closed the deformity not only leads to abnormal head appearance for avyaan rest of the life span but also will increase intracranial pressure leading to further developmental delay and seizures like life threatening medical condition. 

MEDICAL EXPENSE SPEND

Avyaan in the past year and half has been constantly in and out of the Pakistan’s best tertiary care hospital for his on going ailments.

1.    3 major Neuro surgeries

2.    Club foot procedure and 7 casting sessions 

3.    Emergency hospitalization for seizures 

4.    Every day Physiotherapy and occupational therapy sessions started July 2020

5.    Occupational therapy tools (postural chair, hand braces, Motor and sensory activity tools and further go on according to identified learning needs).

6.    Followups through CT scans or MRI cost 

7.    Club foot orthotic Shoes pair, have to change every 6 monthly due to increase foot size (change shoes thrice till now and it will cont till 4 yr of age)

8.    Regular followups with multiple physician teams (61 visits since May, 2019

With their minimum income it was never possible for the family to bear the expense of all the treatment the little one got so beloved family members and friend circle came forward to help them out financially. 



Next 6 months expected medical expense

UAE: Remolding helmet  it will change twice during 4 month process. Travelling expenses (visa process, living  expense, accommodation and 3 UAE trip back and forth: initial assessment, helmet application and follow up).
 
Next 3 to 4 year medical expense

Extending Ventroperitoneal shunt when age and body size increase.


FAMILY SURVIVAL

Having him home is such a blessing when there was a minimal chances of his survival was predicted by the doctors. Our baby Avyaan is a fighter, he is just 17 months old with special needs kid, very strong and cooperative soul who patiently following the holistic treatment since his birth. 
 
Avyaan Ali mother is a Nurse by profession but has to left her work to give 1:1 care to her special need child where as, his father has been out of work due to COVID-19. With the father’s minimum income the family was surviving this one roller coaster year and was able to manage countless medical expense with the support of family members. Both the parents went through so much be it physical, emotional and financial. It is never an easy job for both the parents seeing the elder one crawling, walking and smiling but the younger confined to bed. Trust me parenting two same age kids, while one is ill is overwhelming. Leaving behind Avyaan’s twin brother to grand parents house Both the parents up-till now running often to the hospital whether its for his physiotherapy or occupational therapy sessions or for countless medical appointments.

Till today, the doctors always had a hard time explaining the prognosis and future expectations for Avyaan but parents take Avyaan as a blessing from God. They didn’t gave up or lose HOPE and courageously decided to do everything in their power to give a good life to their son.

Doctors were always unsure about whether he would be able to see, hear, sit or support his head and neck. By the grace of god he is getting better, his vision is intact and with the continuous physiotherapy sessions he is now able to support his neck, head, sit with support and start developing power grip. His minute progress pay back to parents for all of their struggles.

The raised money will ease the financial stress during the devastating time and make it possible for parents to afford the expenses of treatment and travelling to the new city with the added expenses incurred throughout Avyaan’s recovery journey. Uncertainty is indefinite so it will also help the family to ensure that they have money to pay for future medical needs and can focus on Avyaan's health during  this difficult time. 

I Raheel Khowaja by Setting up gofundme page i am showing my support towards my sister’s family. I humbly ask on behalf of Avyaan Ali and his parents to those whose hearts this story touch that if you can provide any monetary help in order for the parents to afford the expense of the treatment. Avyaan has a big life ahead of him please help him to make it better and shinning. Even the smallest donation would be appreciated from the bottom of our hearts. If you are unable to donate, please pray and share.

With love and gratitude.