“It was a fateful day when I knew I was going to become a father." - Yaseen Shaik, Zayaan’s father.
My beautiful baby boy, Zayaan was born on the 26th of December 2023. His tiny hands and feet made me feel so blessed that I could help create something so wonderful.
As the days passed with my son, I started noticing that something was not quite right. I had a strong feeling that I was worried about.
My baby was not able to balance his head even after 6 months. I found this concerning.
On the first week of May, I took my baby and went straight to the doctor where I heard the news which broke my heart as any father would…..
“I am sorry to tell you that your baby is diagnosed with Spinal Muscular Atrophy, SMA -type 1, please stay strong during this time as we will do our best to help him.”, these were the words that kept ringing in my ears as the doctors at Rainbow Children's Hospital in Telangana spoke to me.
Today my little Zayaan is 10 months old and facing a life-threatening disease. I watch my little boy as he struggles, he is not able to crawl or walk. He cannot eat or breathe normally. He is too young and too precious to have to struggle with basic tasks.
What troubles baby Zayaan?
Spinal muscular atrophy (SMA) is a rare hereditary genetic condition in which muscles throughout the body are weakened because nerve cells in the spinal cord and brainstem do not work properly.
The type that Zayaan suffers is Type 1 which is the most common and severe form of SMA. It is sometimes called Werdnig-Hoffmann disease or infantile-onset SMA.
Children with type 1 have limited movement, can’t sit without support, and have trouble breathing, feeding, and swallowing. These are the symptoms that Zayaan already suffers from. Symptoms begin at birth or within the first six months of life.
The other symptoms of SMA that baby Zayaan may soon face include:
- Muscle weakness and decreased muscle tone
- Limited mobility
- Breathing problems
- Problems eating and swallowing
- Delayed gross motor skills
“As I hold my baby brother in my arms, I see his bright beautiful eyes and I want him to know that I will always be there for him. I want him to be my best friend.”- Zayaan’s brother.
A cure awaits….
All I know is that my son needs an important drug injection before he turns two years old.
The cure that awaits my little Zayaan is called Zolgensma (which is a gene therapy that treats spinal muscular atrophy (SMA) in children under two years old. It is administered as a single infusion into a vein.
The drug costs me crores. I have taken care of Zayaan by spending a lot and also by seeking help from family, friends and colleagues but now, I need your assistance to save my baby Zayaan.
Your contribution is a blessing that I know will help my baby to live.
“I have dreams for both my sons. For my baby Zayaan, I have hope that he will live. I will keep dreaming. I want my baby to grow up to be a doctor, he will cure people just like he is going to be.”- Yaseen Shaik, Zayaan’s father.
How can you help little Zayaan?
Donate for Zayaan to receive immediate treatment
- By donating for my son’s drug injection treatment, you help my baby to live, to walk, breathe and eat. All the things we do so easily.
Share his story with your family and friends
-By sharing baby Zayaan’s story, you help to amplify his little voice to someone who cares and is willing to donate.
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తక్షణ చికిత్స పొందడానికి జయాన్ కోసం విరాళం ఇవ్వండి
నా కొడుకు డ్రగ్ ఇంజెక్షన్ చికిత్స కోసం విరాళం ఇవ్వడం ద్వారా, మీరు నా బిడ్డ జీవించడానికి, నడవడానికి, ఊపిరి పీల్చుకోవడానికి మరియు తినడానికి సహాయం చేస్తారు. మనం చేసే పనులన్నీ చాలా తేలిక.
అతని కథనాన్ని మీ కుటుంబం మరియు స్నేహితులతో పంచుకోండి
-బిడ్డ జయాన్ కథను పంచుకోవడం ద్వారా, మీరు శ్రద్ధ వహించే మరియు విరాళం ఇవ్వడానికి ఇష్టపడే వ్యక్తికి అతని చిన్న స్వరాన్ని మెరుగుపరచడంలో సహాయం చేస్తారు.
Disclaimer -
SMA is a progressive disease that causes Jaishvi's muscles to weaken over time. To prevent further deterioration and slow the progression, Jaishvi urgently needs the drug Risdiplam to preserve muscle function only if it is prescribed by the doctor, While the fundraising for Zolgensma is underway, starting Risdiplam immediately is a critical step to safeguard the child’s life and preserve muscle function.
The goal amount of the campaign may be higher than the attached estimates to address and aid the post-hospitalization expenses/contingencies including but not limited to prolonged medication, diagnostics, rehabilitation therapies, and follow-up doctor visits/consultations which vary from disease to disease.