Palliative Care Westmead Children's Hospital
Donation protected
My name is Sara and I am the mother of a very strong, resilient, loving little Angel Miss Lili. Lili had severe Epilepsy and sadly lost her big battle over 7 months ago. Miss Lili would have been turning 5 in a few weeks and I would like to do something in her honour and to say thank you for the amazing love and support that was given to both of us on the hardest journey of our lives. I would love to raise $5,000.00 in honour of Lili turning 5 as a surprise for the Palliative Care Team. Firstly I would love to thank you all for helping me raise over $40,000.00 for Bear Cottage. The only Children’s Hospice in Australia, with the most amazing group of people I’ve ever met.
I would like to share our personal experience with the Palliative Care Team at Westmead Children’s Hospital. Over 7 months ago Heaven gained the most beautiful, loving, amazing, resilient and strong little Angel. My beautiful daughter Lili and she was only 4 years old.
I always knew from day one that Lili was too perfect for this world. I decided to share my beautiful daughter’s story 2 weeks before she gained her angel wings when we decided to raise money for Bear Cottage.
In 2015, when she was 14 months old, Lili had her first seizure and from that moment our lives changed. No matter what medications we tried, none of them could control her seizures and by December of that year she had brain surgery and had her right temporal lobe, occipital and part of her parietal lobe removed. Unfortunately four days later she had a seizure lasting over an hour and twenty minutes. A very long story short, just a month later things started changing and Lili started regressing. Her next hospital stay was 11.5 months, everything that could go wrong did. Her seizures continued and over 35 medications could not control them. She’s had lengthy hospital stays, in fact, to Lili it was almost home because she spent most of her life there. Nothing was working but never once did Lili, I or anyone in her team give up.
Because of this, the Palliative Care Team entered our lives. Not something I could get my head around at the time and definitely something I could not bare. My daughter is not going to die, why is this Team now apart of Lili’s huge team?, why do they need to be involved? Many questions went through my mind. Sleepless nights, more worrying, I was petrified, heartbroken and completely lost. To be honest, I would see this group of ladies walking towards us and my knees would go weak, I’d put on a brave face and while my insides were turning I would give them a big smile and go on about how great Lili and I were doing. I’d make out that everything was fine to hide what was really happening and to block out what may come. The word Palliative played on my mind. A group of ladies that looked so angelic and were so loving and caring but the fact they they were the Palliative Care Team I just could not deal with it. Now I know they came into our lives to prepare me for what was to come. But even they didn’t think it would happen so soon. Every parents worst nightmare. I started enjoying our daily visits as they are all so warming and I knew there aim was to support Lili and I in anyway they could in the most respectful, genuine, caring and loving way. The team consists on Drs, Nurses, A Social Worker, The most amazing Palliative Volunteer that has become family because of her weekly visits still happening till today, the most beautiful music therapist who my Lili loves and enjoyed being serenaded by, one of the BEST TEAMS we’ve had the pleasure of dealing with for many years. The whole team held my hand and gave me strength. They cried with me, laughed with me and picked me up on the hardest days of our lives. They loved my Lili. They gave her time. They gave me love and comfort when I felt isolated and lost. My main aim was to be so strong for Miss Lili, to give her strength and show her that she could over come anything with me by her side for every day of her life. That she is loved and touched so many, a gift from God, a blessing to anyone that met her, a true inspiration. My very own superhero, my beautiful daughter Miss Lili
Thank you for allowing me to share Lili and my story and for donating to such an amazing team, that goes above and beyond for families going through the hardest times of their lives. Any donation big or small will help. Please help make a difference. I will present this to the Team and share photos when this happens.
In honour of Lili please go dotty for her.
Send pics in anything dotty in remembrance of my Angel.
Use the #godottyforlili
GO DOTTY FOR LILI
I would like to share our personal experience with the Palliative Care Team at Westmead Children’s Hospital. Over 7 months ago Heaven gained the most beautiful, loving, amazing, resilient and strong little Angel. My beautiful daughter Lili and she was only 4 years old.
I always knew from day one that Lili was too perfect for this world. I decided to share my beautiful daughter’s story 2 weeks before she gained her angel wings when we decided to raise money for Bear Cottage.
In 2015, when she was 14 months old, Lili had her first seizure and from that moment our lives changed. No matter what medications we tried, none of them could control her seizures and by December of that year she had brain surgery and had her right temporal lobe, occipital and part of her parietal lobe removed. Unfortunately four days later she had a seizure lasting over an hour and twenty minutes. A very long story short, just a month later things started changing and Lili started regressing. Her next hospital stay was 11.5 months, everything that could go wrong did. Her seizures continued and over 35 medications could not control them. She’s had lengthy hospital stays, in fact, to Lili it was almost home because she spent most of her life there. Nothing was working but never once did Lili, I or anyone in her team give up.
Because of this, the Palliative Care Team entered our lives. Not something I could get my head around at the time and definitely something I could not bare. My daughter is not going to die, why is this Team now apart of Lili’s huge team?, why do they need to be involved? Many questions went through my mind. Sleepless nights, more worrying, I was petrified, heartbroken and completely lost. To be honest, I would see this group of ladies walking towards us and my knees would go weak, I’d put on a brave face and while my insides were turning I would give them a big smile and go on about how great Lili and I were doing. I’d make out that everything was fine to hide what was really happening and to block out what may come. The word Palliative played on my mind. A group of ladies that looked so angelic and were so loving and caring but the fact they they were the Palliative Care Team I just could not deal with it. Now I know they came into our lives to prepare me for what was to come. But even they didn’t think it would happen so soon. Every parents worst nightmare. I started enjoying our daily visits as they are all so warming and I knew there aim was to support Lili and I in anyway they could in the most respectful, genuine, caring and loving way. The team consists on Drs, Nurses, A Social Worker, The most amazing Palliative Volunteer that has become family because of her weekly visits still happening till today, the most beautiful music therapist who my Lili loves and enjoyed being serenaded by, one of the BEST TEAMS we’ve had the pleasure of dealing with for many years. The whole team held my hand and gave me strength. They cried with me, laughed with me and picked me up on the hardest days of our lives. They loved my Lili. They gave her time. They gave me love and comfort when I felt isolated and lost. My main aim was to be so strong for Miss Lili, to give her strength and show her that she could over come anything with me by her side for every day of her life. That she is loved and touched so many, a gift from God, a blessing to anyone that met her, a true inspiration. My very own superhero, my beautiful daughter Miss Lili
Thank you for allowing me to share Lili and my story and for donating to such an amazing team, that goes above and beyond for families going through the hardest times of their lives. Any donation big or small will help. Please help make a difference. I will present this to the Team and share photos when this happens.
In honour of Lili please go dotty for her.
Send pics in anything dotty in remembrance of my Angel.
Use the #godottyforlili
GO DOTTY FOR LILI
Organizer
Sara Khoury
Organizer