This page was updated on Monday, August 5th, 2019.
My name is Laila Roy, I’m 38 years old, I am married and I have three 4th graders. I urgently need a life-saving pancreas transplant. I suffer from cystic fibrosis related brittle diabetes. I do not have a pancreas as it was removed as a result of familial pancreatitis. I suffer from constant and frequent low blood sugar. At any given moment of the day or night I can have an extremely low blood sugar, I can pass out and unless I have sugar immediately, I can die. It’s a real fear.
I go to sleep at night with that worry, that I won’t wake up. I can’t ever be alone because of that very real fear and consequence, even with frequent blood glucose monitoring I have low blood sugars and bouts of hypoglycemia quite frequently. Sometimes 10 or 15 times a week and I always have that weighing on my mind. Someone, and adult, always has to be with me. It’s extremely difficult to take care of three rambunctious 2nd graders when in the back of my mind there is a worry of what happens if I pass out? Have I taught them enough of how to dial 9-1-1? How to put frosting in my mouth? How to find candy? How to find sugar? Do they know what to do and will I be okay? Will they be okay? There is a constant worry, a constant fear. There are very real consequences to life without a pancreas. It’s not really life… it’s merely existing, and I need a pancreas transplant.
The cost of follow up care, immunosuppression drugs, and rehabilitation will be extensive, but there will also be significant unforeseen expenses. Your contributions are greatly needed and very much appreciated.
Thank you, Laila.
Why do we need your help?
1. Laila has brittle diabetes – she has NO PANCREAS at all, NO SPLEEN, and NO DUODENUM – all were removed during a previous surgery. Consequently Laila lacks vital enzymes/hormones a pancreas provides and the ability to properly digest and gain nutrients from the food she eats. In the short term this makes life very brittle and a daily risk of death; in the long-term it’s causing her other organs to deteriorate and ultimately they’ll fail.
2. Every day Laila comes close to death. She is “hypoglycemic unaware” – which means she is unaware that her sugar is dropping rapidly and she becomes unable to think clearly enough to give herself sugar.
3. Presently Laila requires full-time care – Richard, her husband, is with her almost 24/7, arrangements are made for someone to be with her at other times.
4. We have a very limited and almost non-existent social network or support system locally in Memphis, TN. (Richard is from the UK.)
5. We have three very demanding 4th graders.
6. Richard is primary carer, he is self-employed, and has his own health challenges. Balancing self-employment with being ever present for Laila is very difficult and makes generating an income, amid mounting costs, extremely difficult.
7. We will lose income during the recovery time, but expenses go on. The cost of 19 medications Laila will need after surgery will be significant, and of course expenses to live and look after the family go on.
Please help with costs relating to Laila’s life-saving pancreas transplant!
We live in Memphis, Tennessee, and the constant risk of death for Laila is a very real matter and the ability for her to be alone or to have any independence doesn’t exist. She has frequent severe blood sugar lows where death would be imminent if she didn’t have people around her. There are times times that she no longer has the ability to think, speak, or act for herself. Icing, orange juice, candy is always available, and she lives with the fear that a sugar low causing her to pass out and die could happen at any time. This is a daily occurrence and makes simple tasks such as going to the bathroom, taking a shower, or one of us running to the grocery store all but impossible alone. She exists with a very real fear of going to sleep and never waking up. She is never alone.
We have almost no support system and the numerous practical issues relating to the surgery is going to put a financial and logistical burden upon us. Richard is originally from the UK and ALL his family is located there. Laila’s family is small and only her mother and sister live locally to us here in Memphis. There are many unknowns and we don’t yet know how long the recovery will be after the pancreas transplant surgery, but we do know that a germ free environment (this could mean kid free environment) will be important, as Laila will be on immunosuppressant medications. The logistics of our 3 children for example, is another major stress we have.
Cystic Fibrosis Related Brittle Diabetes
Laila has no pancreas at all and as a result she lacks important enzymes for digestion and she has no ability to naturally control blood sugar. Presently she has an insulin pump to give herself insulin. However, unlike most diabetics who still have some kind of pancreas function her rare form of diabetes means she is unable to naturally stop her sugar from dropping.
“Too much insulin will rapidly cause a sugar low where she will become unconscious and die.”
The use of an insulin pump for someone with the complete lack of a pancreas is intended as a short-term solution, albeit a very precarious one, and is why she so desperately needs a pancreas transplant.
Laila was born with cystic fibrosis and at the age of 13 she had a pancreatitis attack that led to the complete shutdown of her pancreas; an organ that acts as a limiter for sugar entering the bloodstream and provides many other digestive enzymes to the body. During what should have been a simple surgery, complications meant her pancreas was removed along with other important organs. Not only does she have no ability to control sugar but her gallbladder, a portion of her small intestine, duodenum, and spleen were removed. The blood sugar roller-coaster and inability to properly absorb minerals with missing digestive organs makes day to day life unpredictable and her energy levels vary wildly.
In 2015 Richard has his own medical complications.
At the end of 2015 Richard has his own medical complications where he ended up in a coma for 3 weeks.It was expected on a number of occasions that he would die. Like Laila, he also possesses a very determined and unwavering approach to life. He had an extended hospital stay at Methodist in Memphis and continues to manage his health: This included eye damage requiring ongoing injections, poor voice from paralyzed vocal cords, an ongoing heart condition, and he suffers from chronic pain in his legs. Laila has been steadfast in her support and care for him and, in so many ways, they both are uniquely suited for one another. Richard’s appreciation for what recovery will be like, along with your help, will provide the right care and attention to Laila in her recovery.
First Day of School
Laila is a loving devoted wife and mother to three 4th graders. Family life is busy and her diligence to her health, to the kids, and to me cannot be underestimated in any way. She is very kind, patient, and tenacious in everything to which she applies herself. She has every right to complain, be angry, express her frustration, and give up, but she doesn’t. Instead she fights on, often when he body has other ideas. She isn’t someone who asks for help, so I am asking on her behalf. She has a very determined and unwavering approach to life, she pushes herself hard for the benefit of others, and it’s time for us to support her and help her through this life-saving surgery
Thank you for reading
Thank you for taking the time to read this, and I hope you can join me in supporting Laila through this extremely difficult time. I would like to be steadfast for her and be supportive every step of the way. If you are able to donate to our cause we will be eternally grateful. Please share this story with people you know, as it will be helpful to us and could be helpful to others who share in the medically rare symptoms.
All Donations Are Appreciated
Thank you for reading.