Holiday Hearts Families

SF has acute chronic respiratory failure and is tracheostomy and ventilator dependent. His other diagnoses include: trisomy 18, conoventricular VSD, global developmental delay, and history of pneumonia. He was diagnosed at birth and admitted for 6 months and has required several additional long hospitalizations since. Sah’um is high risk for aspiration and requires 24/7 care which includes tracheostomy management and oxygen and ventilator management and care when sick, which occurs frequently throughout the year. SF has been hospitalized 5 times since April 2023, each hospitalization resulting in admission for multiple days.

Due to the costs associated with each hospitalization, such as transportation, food, and other incidental costs, SF’s mother has fallen behind in her rent and electric bill. SF’s mom is doing everything she can to maintain stable housing for SF. Stable housing is necessary to prevent future hospitalizations and maintain SF’s medical stability. This financial assistance would allow SF and his mom to celebrate the holidays in their home together without the threat or stress of a possible eviction.

Over the summer of 2023 CP was diagnosed with leukemia. She has been unable to attend school this year due to her treatment, and has been in and out of the hospital frequently. She was able to return home for her birthday, however she will continue to receive treatment in the hospital throughout the year.

Financial assistance would greatly impact this family. CP’s guardian would be able to focus on her treatment and care this holiday season, and all children in the home would be able to enjoy the holidays with less stress/worry.

SG is a 24-month-old with VEO IBD (Very Early Onset Inflammatory Bowel Disease) caused by STXBP3-related immunodeficiency, and bilateral sensorineural healing loss. SG underwent mismatched unrelated donor peripheral blood stem cell transplant with TCR alpha/beta T cell and CD19+ B cell depletion in February 2022. His course has been complicated by rotavirus infection, prior episodes of fever and hemodynamic instability requiring intermittent PICU (Pediatric Intensive Care Unit) transfers, skin GVHD, refractory colitis, and EBV reactivation. SG underwent diverting ileostomy and G-tube placement on 9/14/22. He also received Cochlear implants in May of this year. Since birth, SG has been hospitalized for most of his life. His most lengthy admission started on October 29, 2021, and he was discharged on November 15, 2022. Since discharge he as has multiple unplanned admissions. In addition to the need for frequent hospitalizations, SG also requires close outpatient follow up with VEO IBD (gastroenterology), oncology/blood and marrow transplant, otolaryngology, ophthalmology, audiology, immunology, physical therapy, and occupational therapy. Saul’s condition is chronic and will require lifelong follow up with these specialties, as well as inpatient care to manage worsening symptoms. SG lives with his parents S and L and 2 siblings S and S. Prior to SG’s diagnosis Mom and Dad worked. Dad actually worked 2 jobs but had to leave one of them once the transplant process started. Unfortunately, Mom has not been able to go back to work because Saul still requires a lot of care. The family does get 8 hours of nursing 4 days a week. They were a 2 income household that went to a 1 income household.

KM has a diagnosis of adrenoleukodystrophy. This is a degenerative neurological disease that KM would ultimately die from. KM showed signs that the disease was progressing which indicated he needed immediate intervention. The only cure for this disease is bone marrow transplant and it is extremely high risk for these patients. KM was actually the first patient to undergo a gene therapy form of stem cell transplant for this disease. He underwent his transplant in September 2023 and was inpatient for over a month. KM’s mom has not been able to work as KM is strictly isolated post transplant as he is severely medically fragile and very immunocompromised. KM can’t return to in-person school/day care for approximately 6 months post-transplant and requires constant care from an adult trained in his medical care needs. Additionally, just prior to the news that KM needed a transplant, his baby sister had completed a several months long admission at the CHOP NIICU and family was just working to get back on their feet after that medical crisis when the news of KM’s disease progression came.

This assistance will allow the family to pay some of their household bills while also freeing up some money for the holidays. Dad is working overnights as much as possible to provide for the family but with the loss of mom’s income and increased expenses associated with KM’s admission and now appointments in clinic at least once per week, the family is feeling financially stressed.

JB is a 15-year-old male patient diagnosed with Kaposiform Lymphangiomatosis. JB is followed by the Complex Vascular Anomalies Program at the Children’s Hospital of Philadelphia under the direction of Dr. Denise Adams. JB has a vascular malformation, a venous malformation, Kaposiform lymphangiomatosis and a tumor. Kaposiform lymphangiomatosis (KLA) is an extremely rare condition in which the vessels that carry lymphatic fluid throughout the body expand and interconnect. These abnormal lymphatic vessels invade and cause damage to surrounding tissue, bones and organs. KLA often presents with respiratory problems caused by vessels leaking lymphatic fluid into the chest area. This often leads to pleural effusion (fluid on the lungs) or pericardial effusion (fluid around the heart). KLA may also interfere with blood clotting, which can lead to life-threatening hemorrhage. Long-term outcomes for patients with KLA vary depending on the extent of the lymphatic leaks, which part of the body is affected and whether the child is treated and monitored by a facility that has experience working with individuals with lymphatic disorders. Despite aggressive therapies, the 5-year survival rate of individuals with KLA is only about 50 percent. Patients with certain vascular anomalies, have an unusual presentation in their vessels, cysts in the lung and bones, as well as extensive thrombosis of major veins. This condition causes problems with circulation which create exhaustion and fatigue for the person experiencing them.

JB comes to CHOP for regular medical maintenance, MRI/MRA imaging studies, lab work, and Oncology/Hematology appointments. His mother, Carmen, accompanies JB to every appointment. She travels a far distance for a long day of appointments and spending the night in a hotel helps the family recuperate before driving home. In the last year, JB has had one major resection surgery, and 3 two week long admissions. JB’s latest scans have show continued growth and swelling around his brachiocephalic artery. JB’s medical needs have caused Carmen to have to quit her job as they would not provide FMLA or flexible accommodations. Carmen supports 5 children, 1 with complex medical needs, all on one single income.

This grant would impact this family greatly. In the past year, Carmen has struggled to keep up with bills, and fought to keep her house from going into foreclosure. Not only would the grant support Carmen with her house’s bills, but would also allow her to purchase groceries and gifts for her children during the holidays.

ZK and her brother ZK both inherited a condition known as non-ketotic hyperglycinemia. This condition has led to both children having neurological concerns including epilepsy, profound developmental delay, and vision issues. ZK (sister) was recently admitted to the neurology floor at the Children’s Hospital of Philadelphia (CHOP) from 8/1/23-8/11/23 and again from 8/30 to 9/5/23. ZK also has been diagnosed with Colpocephaly, Lennox-Gestaut Syndromem, neuromuscular respiratory weakness and neuromuscular scoliosis. ZK is scheduled to undergo spinal surgery next month.

ZK (brother) is currently admitted to the neurology floor at CHOP for treatment of a fever and increased seizure activity. Both children require follow up with several specialist including neurology, genetics, orthopedics and pulmonology. Both children also require home nursing and medical supplies such as feeding pump, formula, and suctioning machine.

The K family face regular financial hardship due to having two special needs children that require full care. Mr. K is the only parent that is employed. Mrs. K stays home to care for their five children, including ZK and ZK who require around the clock care.

The K family have two special needs children that require regular medical care. This means the K family is often required to pay for medications, copays, insurance bills and medical supplies. Currently the Khan family are behind on their electric bill. As Mr. K is the only working family member he often has to work long hours to pay for all the family’s needs. Financial support could allow this family to pay off debt, and it would allow Mr. K to spend some more time with his family this holiday season.

KE has a bleeding disorder (von Willebrand disease). There have been changes in household income due to the separation of his parents. His mother is the primary caregiver for him and his 4 siblings. His siblings live with health conditions of their own. 

KE’s mother could use financial assistance to get her back on track as she prepares to return to work. Financial assistance will allow her to continue transporting KE and his siblings to medical appointments and maintain household bills.

JJ is a single father to JB, who was recently admitted to the hospital due to feeding concerns. JB has trisomy 18 anomaly, Dandy Walker malformation, bilateral optic nerve hypoplasia, global developmental delay and is dependent on gtube feeds. He attends a special education elementary school and his father was recently employed in a school cafeteria. The pandemic severely affected Dad’s ability to keep paying his bills. JB was sent home several times because he was ill or a classmate was positive for COVID, requiring JB be quarantined at home. JB having to miss so much school required Dad to take off work and provide childcare. Dad reports loosing his job due to having to take off some many days and provide for JB. He requires home nursing care and a specialized stroller/wheel chair. JJ being a single father to a medically complex child has been difficult, as the family does not have much family support. Dad has difficulty finding people who can watch and care for JB while he is at work and running errands.

Dad reports being significantly behind on his rent by several payment. He has been unable to find another job that will accommodate JB’s school schedule and is currently looking into being a home health aide. JJ is one of the most consider and caring people I have met in my job at CHOP and I know he would be grateful for any assistance you can provide. Your financial support will help JJ get caught up on rent and could possibly assist in paying for some of JB’s needed medical supplies.

GM was diagnosed with High Risk Neuroblastoma and he has been in treatment since October of 2021. Unfortunately, his cancer has not responding to the treatment. As you can imagine this has been an extreme hardship on the family, both financially and emotionally. KS is a single mom of two children. Any financial assistance would be greatly appreciated as the family has already had to move once do to financial strain. KS has traveled with her son to numerous states for various treatments.

LB has a diagnosis of osteopetrosis, a rare and life-threatening disease. She was admitted at the end of June to undergo a bone marrow transplant. LB experienced some complications during her transplant admission and she remained inpatient through September. Unfortunately, on October 1st she was emergently re-admitted due to a life-threatening transplant complication called TMA. LB has undergone 2 cardiac procedures and may require a cardiac surgery. She remains admitted and closely monitored.

LB’s parents are divorced and Mom is the primary caregiver. Mom was working full time prior to LB’s BMT admission. While Mom’s employer has agreed to hold her job until LB’s medical condition allows her to return to work, Mom has not gotten paid since July. Additionally, this current unplanned admission has created additional financial stress as Mom manages LB’s needs at bedside and her sister’s needs at home.

Financial assistance will allow Mom to focus on LB’s hospitalization and take some stress off nearing the holidays, as it would allow Mom to pay a bill and have some funds for the holidays for her daughters.

Mom is a single parent who is employed but provides for TW and his three older cousins. Mom is the sole provider for the children. TW has Spina Bifida, a lifelong condition that causes neurologic impairment and paralysis, developmental delays, and problems with bowel and bladder. He is also diagnosed with autism.

Financial assistance with benefit TW’s family by allowing Mom to have the funds to purchase gifts for TW and his cousins who live in the home. Mom would be grateful for any assistance that The Foundation can provide to them.

Hello, my name is E. In February of this year 2023, I started a journey against cancer. I had my first surgery, then a double masectomy in March. Since that time I could not work and nothing went easy for this journey. I had to undergo another surgery in April to remove the lymph nodes under my arm which prevented me from handling my arms normally and was in much discomfort. I had chemotherapy and radiation and it prevented me from returning to work and not only that, I just had a hysterectomy from which I am recovering. I thank you The Foundation of your help. I have 2 children who depend on me alone and one with autism. 

Financial assistance will help immensely as I am currently out of work and a single parent. Thank you very much.

The family is caring for two young children who are both diagnosed with spina bifida. Due to the medical needs of the children, it is very difficult for mother to work. The children have multiple appointments at CHOP on an ongoing basis.

Financial assistance will allow the family to purchase gifts for the children for the holidays. Assistance can also benefit the family to pay household bills.

C is an 8-year-old boy with a progressive neuromuscular disease that he was diagnosed with about one year ago. C was admitted to the hospital on 9/5/2023 for emesis and respiratory distress.

On the day he was admitted, his Mother, KW, was also emergently admitted to the hospital for an emergency c-section and hysterectomy. Mom experienced many complications after her procedure that kept her in the hospital for several weeks and she had to be readmitted again after discharge. Mom is finally home now, but with significant limitations and in a wheelchair. C’s maternal grandmother has been at the bedside with him, but she herself is also going through cancer treatment. The family has had tremendous health challenges over the past few months that they have had to navigate. It has been devastating for Mom to not be able to be here with C during this long admission and support him the ways she wants to as a mother. C continues to require hospitalization without a discharge timeline because of significant neuropathic pain he is experiencing and motility issues.

The past three months have been filled with multiple family members being hospitalized and the only place you want to be when a loved one is in the hospital is with them. KW and C have an incredibly close and special relationship and have never been apart like this. KW is truly one of the most nurturing, warm, and loving mothers I have encountered in this job. Even though for several months, I had never met her in person, her presence was very much here with our team and with C. You can hear in her voice the love she has for C. And as someone who is meeting KW and C for the first time this admission, it stands out to me how similar KW and C are as people. They both have gentle, kind, and nurturing spirits. Given how close and similar they are, I can imagine it only makes it more difficult for them to have been separated while they are both sick. I hold tremendous admiration for who KW is as a person and as a mother, and the ways that she has navigated these past few months as a single mother with so much grace. It has been so humbling to witness their family’s immense love for one another. I will never forget when I called Mom the day after C was admitted and she was also in the hospital, she broke down into tears and all she wanted was for me to make sure that C had a stuffed animal to hug. C’s family has been through unimaginable circumstances these past few months and to have a light at the end of it with the holiday season would make such an impact.

KW is a single mother, and though that consistently comes with its financial challenges, this is a particularly challenging time. Due to KW’s own hospitalization and lack of mobility as she recovers from multiple surgeries, she has been unable to work since the beginning of September. Now that KW is out of the hospital, after being away from C for all of this time, all she wants to do is focus on C and being here with him. And that is all that she should be doing. Having this assistance would truly be a blessing to this incredible family.

It would allow KW to focus on recovering and being here with C during this challenging admission. With that being said, KW has five other children at home, including her newborn baby she gave birth to in September, who she is also trying to be there for. With the holidays coming up and going through their savings on rent and basic needs, this assistance would allow the family to celebrate the holidays.

Without this assistance, KW is not sure how she will afford to make the holidays special for her family this year, and now more than ever, the family need something to look forward to, to bring them together. KW’s goal is to have C home by Christmas and while I am not sure if we can make that happen, I am sure that I can do everything I can to advocate for this incredibly deserving family to have a light in the midst of this unimaginable hard time. KW and C are two of the sweetest and kindest people I have ever met and they deserve that kindness being given right back to them.

DL is a 7 year old diagnosed with spina bifida, a lifelong condition that causes significant impairment to multiple body systems. Due to her spina bifida, DL is paralyzed in her lower extremities and uses leg braces and a walker to walk. She requires ongoing follow up with her specialists.

Due to DL’s medical needs, it is difficult for mother to work since DL is dependent on her parents for her care. She requires a medical procedure to her bladder every few hours. The financial support will allow the parents to purchase nice gifts for DL and her sister this holiday season.

They are all set.
We are doing great!
Got it.
ReplyReply allForward

I am 32 and have stage 3 colon cancer. I got though my chemo treatments which was very tough and had to then get radiation therapy treatments as well. I am out of work because of my diagnosis. I had to shut my trucking business down due to a dramatic weight loss and lack of energy as I had no strength or mindset to do anything. I have been having other health issues as well. I have been in and out of the hospital for months on end and kept getting c diff and colitis and sick in general due to a very weak immune system. I have been in hospital a lot for numerous days at a time to control my pain and health issues. It has been a real struggle. I currently live with my sister, because I can’t take care of myself or my place since I’ve been sick. I’m staying with my sister, her husband and there two kids. I am grateful for them letting me live there and helping me through this tough time with the little things I can’t do myself at this time. I have just been staying positive through it all as much as I can. Even though things have been going against me. I have another surgery still to schedule to get the rest of the tumor removed and then a long recovery afterwards but am looking forward to the recovery and getting back on my feet going to be a tough road ahead still but just trying to stay positive though it all.

I am truly grateful for this opportunity to receive financial assistance as I am currently out of work and can not afford a place of my own with all my medical bills. I want to help my sister out as well as with her family, as I’m currently staying there and my one nephew has autism.

The family just lost their wife and mother to breast cancer on October 10, 2023. Dad quit his job prior to the loss of his wife to care for her before she passed away. Dad is currently unemployed because he is now the sole caregiver of his three children who are all under the age of five. His oldest child also has an autism diagnosis.

Financial relief and assistance with childcare may be beneficial for dad and his family — and allow for them to effectively begin the healing process after the loss of such a significant family member. Financial relief while seeking support with childcare would be greatly appreciated by this family.