The Rare Disease Struggle - a mother at home with her high-needs boys
A mother needs our help to provide for her high-needs teenage sons, one with a rare disease needing a costly special diet.
Wellington
Emma* and her boys urgently need your financial help, please. Emma has two teenage sons who need her at home to care for their unique and challenging needs. Her youngest boy has a rare disease and needs a special diet, adding to her costs. Her eldest boy is neurodivergent and needs almost constant care.
We have set up this page for Emma, to protect her boys' dignity and privacy. The boys have enough struggles without exposing them to comments online.
Those of you who know “Emma” or her boys personally, please share this page with your friends, work, hobby or sports networks and encourage them to donate too.
Emma had to leave her job to care for her boys. Her elder boy has ASD (Autism Spectrum Disorder), ARFID (Avoidant/Restrictive Food Intake Disorder), anxiety and depression. He has struggled attending school and is unable to feed or care for himself properly. In 2020 he was hospitalised as he was dangerously underweight. Her younger boy has a very rare medical condition, Primary Intestinal Lymphangiectasia (PIL) and recently had a prolonged epileptic seizure.
By being at home she will be able to try to turn things around for her eldest son by preparing high calorie meals for him and getting him out exercising. She will also be able to prepare the high protein and low fat meals her younger son needs, manage his medications, get him out of the house and moving, and home-school him when he isn’t well enough for school.
* Names changed to protect the family's dignity and privacy.
Mark Blair's involvement (page creator)
I am a friend of Emma's and have spent time and some outings with her with her boys. As she wishes to safeguard her boys' dignity and privacy I have created this page in my name to keep them anonymous. Mutual friends, please respect this in your comments.
Use of funds
High protein and extremely low fat meals for her younger son, and to buy a device to alert her if he has another seizure, transport to medical appointments, occasional outings to make up for the boys missing fun school social activities.
Other page links
Latest update
Update June 2025 6 June 2025
The last few months have been a pretty challenging. In mid December Mr 16 started a trial of a drug that might have helped his condition. Unfortunately he had a nasty reaction to the medication, with his face swelling badly and coming out in pustules, so we had to miss Christmas with family, and I took him to ED early in the New Year. He had to stop the drug and have antibiotics to treat the infected skin. His seizure medication was also causing lack of appetite, and making him very tired, so he has stopped taking it, and we hope no seizures will occur as a result, so that he will be able to start learning to drive. He is slowly working on some Te Kura learning, but fatigue is a real hurdle for him.
Mr 19 restarted University study, and I drove him in and picked him up each day, and worked hard to help him stay on top of assessments. However, he became very depressed. The doctor tried prescribing two different antidepressants to the one he was already on, but the first made him extremely groggy, and he had a nasty allergic reaction to the second one, coming out in hives all over his body. He has had to pull out of study for now.
The goal for the next few months is to get both boys learning to drive, and to get them out of the house a bit more.
Latest donations
Thank you so much for supporting *Emma* and her boys so generously.
Thank you Jannene, your acknowledgement and support is really appreciated.
Oh, thank you so much, that is extremely generous of you!
Thank you for this kind donation. Much appreciated.
Thank you Nerys and Dave for your generosity. Wonderful to have your support.
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