Incredible father's (and) mother's dedication to helping their child. All the research was not for naught, it will save a child's life someday. Massimo's life was full of love and fun.
❤❤❤🙏🏼🙏🏼🙏🏼 😞I have a great grandson with *X Linked Hyper Igm *POLR3A hypomelmating Leukodystrophy *Wiedemann Rautenstrauch syndrome He’s now 10 months old. He was very sick and in PICU 2/3/2023 until 4/4/2023…. During that time also on life support 5 weeks before diagnosis…😞😞😞❤ We have him home with us… multiple meds… and still feeding tube… 2 weeks ago he learned to roll over… not sitting up - yet!!!! Thank you so much for sharing your experience ❤️So very sorry for your loss ❤️❤️❤️😞😞😞
Why no one should Never Ever Underestimate the LOVE of a Parent's Will to do whatever it takes to SAVE THEIR CHILD!!! Amazingly This Dad/Mom went Over and Above what even Medical Researchers at the time weren't aware of yet!! Blessings to all 💙✌🏼👍👏🤗✌🏼💕
@donnalee721 Stephen Damiani said, in the early part of this Australian Story, that he was a Quantity Surveyor by profession. And that he'd failed his Year 11 Chemistry mid-term paper (said with irony !).
Through GOD anything is possible. We may never understand all the inner workings of the universe but we know the greatest love is how a parent will lay down their life for their children.
My heartfelt admiration is so great that you have allowed me to share in you happiness and your sorrow! Thank you. My prayers and blessings are being given for you and your family!
There's something ominous about the three frying pans hanging on the left in one shot, sprayed as they are with non stick chemicals. Hard not to ask how much of these abherrant genetic disorders are caused by such intrusions into the normal diet of humans.
It's sad when a child dies, but there's a reason why people and animals with genetic disorders die early - it's natural. At least this couple could afford an egg donor and they understand that they shouldn't have more biological children together.
Narrator has interesting accent. Kinda Aussie. Kinda Scottish or Irish. Strange. Poor little baby. These diseases are horrendous. The parents are remarkable.
Massimo had a mission in life. His parents and the future of medicine were blessed.
The cause is well known this stuff easily preventable if the parents didn't use mutagenics like alcohol before conception
Incredible father's (and) mother's dedication to helping their child. All the research was not for naught, it will save a child's life someday. Massimo's life was full of love and fun.
❤❤❤🙏🏼🙏🏼🙏🏼
😞I have a great grandson with *X Linked Hyper Igm
*POLR3A hypomelmating Leukodystrophy
*Wiedemann
Rautenstrauch syndrome
He’s now 10 months old. He was very sick and in PICU 2/3/2023 until 4/4/2023…. During that time also on life support 5 weeks before diagnosis…😞😞😞❤
We have him home with us… multiple meds… and still feeding tube… 2 weeks ago he learned to roll over… not sitting up - yet!!!!
Thank you so much for sharing your experience ❤️So very sorry for your loss ❤️❤️❤️😞😞😞
In his short life , you, your wife and Mo have made a tremendous impact on science and future patients.
Why no one should Never Ever Underestimate the LOVE of a Parent's Will to do whatever it takes to SAVE THEIR CHILD!!! Amazingly
This Dad/Mom went Over and Above what even Medical Researchers at the time weren't aware of yet!! Blessings to all 💙✌🏼👍👏🤗✌🏼💕
What a beautiful, brave family,. Massimo helped change the world for the better.
Incredible dedication by these parents, did I miss what the occupation of the Dad is, obviously a very intelligent man! So sad to hear Massimo passed
@donnalee721 Stephen Damiani said, in the early part of this Australian Story, that he was a Quantity Surveyor by profession. And that he'd failed his Year 11 Chemistry mid-term paper (said with irony !).
One of my family member has this leukodystrophy at the age of 50, God save her..
Wow. What a love for your child can accomplish.
Through GOD anything is possible. We may never understand all the inner workings of the universe but we know the greatest love is how a parent will lay down their life for their children.
That's what EVERY parent needs to do. Most doctors aren't personally invested in finding a cause or cure, but someone needs to!
Yes despite science being full of answers, they don't read
Rest in peace sweet angel!
Massimo - Brave soul to come here to help others. Mom and Dad too! 💥💥 You will find the cure. Blessings 🌟🌟
My heartfelt admiration is so great that you have allowed me to share in you happiness and your sorrow! Thank you. My prayers and blessings are being given for you and your family!
What an amazing family ❣️❣️❣️
Genetics is so amazing
What an amazing story so clever are those sciencetist
So beautiful how can yu not get attached to this child
Very very sad .😢
I'd be interested to know why they thought Massimo's condition was probably passed down maternally. Does anyone know the reason?
Good question...
There's something ominous about the three frying pans hanging on the left in one shot, sprayed as they are with non stick chemicals. Hard not to ask how much of these abherrant genetic disorders are caused by such intrusions into the normal diet of humans.
He's so beautiful
Wow Massimo left hope for other children
I have a 3 years old boy with a metachromatic leukodystrophy(MLD) he already can’t talk set or walk is there is anybody can help me?
Sweet little boy
He is with his God.
Angel
This disease is no cure, because my little baby is patient is this rare disease 😓
Not yet - that's the goal though. I'm so sorry to hear about your baby xox
😢
I’m so sorry about your baby.. no there is no cure but if newborns are screened, a cord blood transplant can allow the child to live symptom free
Pray for all guys my small baby boy
My baby also patient by the leucodystrophy he has 11month. I don't know how I can help him
It's sad when a child dies, but there's a reason why people and animals with genetic disorders die early - it's natural. At least this couple could afford an egg donor and they understand that they shouldn't have more biological children together.
Tremendous. I pray that you succeed.
Narrator has interesting accent. Kinda Aussie. Kinda Scottish or Irish. Strange. Poor little baby. These diseases are horrendous. The parents are remarkable.
Many non native aussies are descendents of Irish and scots. Prison ships brought many people to from those two areas.
Bad genetics..yikes